Friday, 30 September 2016

A step in the right direction! Inpatient Neurorehabilitation for FND Weeks 1-3

On the 8th of September, I was admitted to a neurorehabilitation ward. I had no idea how well I'd cope- physically or mentally. In the month or so prior to admission, I went downhill a lot. And I mean A LOT. To the point where I was questioning the need to accept a hoist or go into a nursing home short-term. It was that bad. I was having non-epileptic seizures almost daily, that were lasting hours, and was feeling deathly. I even ended up in an ambulance to A&E at one point due to spending all day barely conscious.

When I got the call to say my admission was imminent rather than several months away, I was shocked, but actually relieved more than anything. I knew I desperately needed the help, and the situation had become so difficult with me at home that something had to change urgently, so it felt like it had come at just the right time. I felt ready and keen, while also fully aware that it was going to be physically and mentally challenging..

The first day, I arrived and the staff were so lovely. I waited in 'the day room' initially, with my parents and a patient who was being discharged that day. I felt surprisingly ok about it all. I answered all of the admission questions without any real level of distress. I coped fairly ok with the examination to assess me. I was chatting and getting on fine with the ward staff. When my parents were leaving, my mum gave me a hug and a kiss and I knew she'd be apprehensive about leaving me, so I said 'I'm going to be ok, they'll look after me here', and I meant it!

Unfortunately that night, closing my eyes to go to sleep triggered my medical/hospital-related PTSD to a really horrendous extent.. My stress/anxiety/complete-and-utter-terror levels didn't settle. It was constant, for days and days. I was startled any time anyone came near me, I couldn't cope with being alone.. I was a real mess. At times my 'extreme anxiety state' was completely debilitating, I was verging on psychotic because of my stress levels, I was restless, I could barely sleep at all, I was having A LOT of seizures and body flashbacks, and my movement disorder was worse. The only time I got relief to an extent was when my family was with me, or 1 or 2 fellow patients.

Honestly, that first week was practically unbearable, despite being surrounded by lovely caring staff and the support of various mental health professionals. I knew logically that I had nothing to worry about and no evidence that anything bad was going to happen to me, but my body was responding in a way that was entirely outside of my control. The only thing that kept me there rather than discharging myself was knowing that if I left, my PTSD would be even worse, I would've just added to my negative experiences in hospitals, and I'd never again get a comparable opportunity to regain my mobility and independence (and would possibly never tolerate attending a hospital ever again). I felt trapped in a way, because although my mental health was making things basically unbearable, I didn't feel that discharging myself was a viable option, given how impossible it had become to cope with me at home, and given how difficult I felt my mental health would be if I left in an even worse state, with no real hope for improvement in my physical health.

Thankfully, with the help of changes to my medication, time, increasing levels of trust in the staff, and reducing levels of fear, my mental health became significantly more manageable. It's still not perfect, but given the experiences I've had in hospital, and the severity of PTSD that has resulted, I think it would be unrealistic to think perfect is possible just at the moment, particularly when I also take into consideration the level of uncertainty over what can be achieved with me during my time here, and also the element of depression related to my level of disability. My mental health is going to be an additional challenge during this process, at least for a little while.. But it's bearable now. I can cope and engage with everyone here and focus on making progress.

Moving from mental to physical health, things are going well. I'd maybe go as far as to say really well, but it's hard to judge when I've got nothing to judge against.. All the staff are saying I'm doing incredibly well, but maybe they say that to everyone to keep them motivated, I don't know 😄

Occupational therapy has been going alright- I've played a few games and helped a bit to make a cup of tea and been on a trip to the supermarket with a couple of staff members- but the really exciting progress so far has been in physio to be honest.

On the day I was admitted, I couldn't stand, and hadn't stood up fully once since January. On the day after I was admitted, we tried in physio and I got 3/4 of the way up, on a piece of equipment where you can pull yourself up to a large extent with your arms, and that triggered a seizure. The following session we tilt tabled me to a standing position passively, but I didn't last long before I started to feel unwell and we had to flatten it. Then I stood myself up from a raised seated position using a 'Sara Steady' where you pull yourself up with your arms and your knees are blocked. Initially it was absolutely momentary. Then I managed to stay up for a very quick count of 3. We built on that and then I made the leap to a frame.

Moving to the Zimmer frame meant pushing down with my arms rather than pulling on a bar, and standing with no knee support (apart from from physios initially). I then started standing to the frame for increasing lengths of time, eventually exceeding 3 minutes on one occasion! They were timing my attempts with a stopwatch to begin with, and the improvements were great. There were obviously off days and symptoms and seizures along the way, but that was not unexpected.

The next stage was thinking about moving hands/looking around/shuffling feet while upright. That wasn't easy, as more thinking/more complex movements etc gives more chance for my brain to mess up messages. And it did exactly that quite often initially. I had to use seizure management strategies or stop attempts at things quite frequently. And there were quite a lot of flops involved, some more drastic and some more responsive than others. But I made progress, with the help and support (sometimes literal physical support!) of my physiotherapists.

Today, I started the next phase. Today, I swapped to a frame with 2 wheels on the front. I took my first actual step. MY FIRST STEP SINCE NOVEMBER.🎉 Yeah, I completely lost my balance. Yeah, I had to be caught/held up to an extent by my physios. Yeah, the proper step was with my better leg. But I got that foot to leave the floor and move forward under my own control. That's massive for me. There's a hell of a lot still to work on. And it's not reliable or repeatable in a single session just yet really. And it's certainly not safe without 2 physios hovering ready to catch and rescue me. But I stepped! Yay!☺️

Next week, I will be starting with new physiotherapists (due to rotation of the staff), which will be really hard for me, mostly because there's the real risk of triggering non-epileptic seizures during physio, and having a seizure accompanied only by healthcare professionals I haven't built up trust with yet is probably my biggest fear.. Luckily, a senior physio that I do know is going to be here on Monday and Tuesday, so I've asked for her to be in on Monday's session for sure, and that's been almost promised (unless she's off ill basically!). If I'm at all worried about seizures with the new ladies initially, I'll ask them to get a member of staff that I know well ASAP if anything does happen, and I'm sure they'll understand given that they will be aware of my 'history', and it will only be initially until I've got to know them more. Hopefully I'll continue to make really good progress with the new physios!

I'm feeling tired now, so I think I'll leave this post there, as I don't think there's anything else I want to mention on here just now. But there are really promising signs that I'll regain a better level of function, and that's given me a lot of much-needed hope!

I'd already taken lots of metaphorical ones, but today I've taken a literal 'step in the right direction', and that feels pretty awesome!!

Me stood up 🎉

Friday, 12 August 2016

Sick of seizures..!

It's been a while since I've updated on here about everything.. I last posted on 15th July, when I'd recently found out about my impending return to hospital. Those of you who follow my Instagram (@Jess_ME_CFS), Twitter (same) or Facebook ( will know both that I'm not in hospital yet, and I've had a bit of a rough time just recently..

Let's start on a more positive note. Last time I did an update post, I was about to head off on a week's holiday. Despite not sleeping well, and a day where I was unwell, and another where a seizure interfered quite a lot, overall, I coped well, and had a lovely time. It was a much-needed reminder that I can still experience a degree of normality despite everything. And knowing I was going to be returning to hospital in the not too distant future just made it all seem sweeter in a way. It was lovely to spend some nice time with my parents and a couple of close family friends, and I even met up with a friend who also battles chronic health problems while I was away, which gave me a much-needed chance to chat things through with someone who 'gets it' to a large extent.

While away, on the day I was already unwell, I was contacted about 2 things that were difficult. The first was the hospital that I complained to after a very traumatic experience, wanting to know whether I'd been happy with their response. I told them that I found their response incredibly insulting. I've had a few calls since (from the safeguarding social worker) and I'm meant to be contacting patient relations again on their advice, but just at the moment, I can't really deal with all that. My back pain is still awful though, and my PTSD is a challenge, so yeah- I'm still bitter about what was done to me to be honest, and frustrated/concerned that nothing seems to have been done to prevent a recurrence affecting another patient. The other was news from uni- wasn't completely unexpected, but disappointing. I think if I decide to blog about that, I'll do so some other time separately though.

Since getting back from holiday, it's been really quite stressful constantly waiting for the call to say the hospital have a bed for me. Obviously being hospitalised is something that's incredibly daunting for me, so jumping every time my phone goes off, and waking up each day wondering whether today's the day, is pretty rough. Just being nervous about that is probably throwing me off a bit really.

I'm struggling with my health in lots of ways just at the moment.

I've stopped my preventer inhaler for my asthma, because since a change to my medications (I think), it gives me a bad tremor. I can't deal with that on top of everything else. The worst that will happen is a return of my asthmatic cough really, which is already happening to an extent. I don't pretend asthma is something to mess with, and certainly wouldn't recommend anyone else changing their own meds, but I'd been forgetting it a lot accidentally (like, pretty much all the time), so knew I wasn't having an asthma flare-up as a result. My asthma is mostly related to allergies, and to an extent exertion. My allergies are fairly well controlled with antihistamines at the moment, and exertion is pretty non-existent, so should be fine. I'll discuss with the Drs when I'm in hospital, but I'm avoiding my GP for now.

I'm incredibly tired at the moment. Since changing my medication, I've been getting about 4 hours sleep per night, and that's been over a month now, so I think it's largely simply sleep deprivation. Even 'just' that can have a massive knock-on effect on other conditions though, particularly my CFS.

My exhaustion and CFS worsening has meant I've had some rough days with my N-E Seizures. After a few good months, it feels like a big step backwards, and a stark reminder of how fragile my situation is and how quickly things can spiral. In the space of 7 days, I've had 6 seizures, 1 more than I had in the whole of May, June and July put together. I've spent rather a lot of hours unresponsive, and many, many more with horrible seizure warning symptoms (all spotted in retrospect, as it's so hard to spot symptoms like drowsiness among everything else!) or recovering afterwards. On one of the days I came round after a 3 hour seizure and had just got to the point in the recovery period where I could speak and move all 4 limbs with a little strength and some control when I went back out again. So frustrating. It's been many months since I've had a day as bad as that. Since then, most days have been bad.. I still find the seizures, and the symptoms that surround them, very challenging. And it's always scary when you think you've got some level of control over something and then you're proven wrong. It seems like I can prevent a lot of the seizures that I get warning of, which tend to be ones with a significant psychogenic element (where something had severely triggered PTSD causing a sort of body flashback etc), whereas the ones where my body just physically gives up on me (due to exhaustion etc) just seem to come seemingly out of the blue, with no real chance to do anything to prevent them. Other than try to manage my conditions/symptoms better, which is easier said than done to be honest.

I was told my type of seizures do tend to change over time, and this had already been apparent in a few ways (like how they become far far longer), and now they seem to be involving very short (I think) episodes of complete unconsciousness. I've always been completely aware throughout before, just completely unable to respond. It doesn't make that much difference really, just feels a bit strange. It's like coming round from a dream, but into a state where I'm still not able to respond. I'm still aware throughout that I'm in a seizure and that I've had them before etc, I'm just aware that I'm no longer always fully 'with it' throughout, although most of the time I still am.

I hate seizures with a passion, and another symptom I really hate is my nausea. It's not to the extent that I want to go back on the mirtazapine, as I realise now that it made me feel horrendous, but I really miss the relief I got from it in terms of my nausea. I wonder whether I should've gone through with the referral to the specialist in gastroparesis for testing while I had the chance. I think that opportunity has been and gone now though, and I'm not sure a definitive gastroparesis diagnosis would change much anyway, plus I know why I made the decision I made at the time and fully understand why I had had enough of referrals and prodding and poking, and do kind of feel the same again now. Right now, I'm taking no medications for nausea, for the first time in years (for a variety of reasons- some have been deemed to risky for me now, others just don't work so seem pointless). I'm coping just about, and am managing to eat enough I think (to keep my weight safe), so hopefully it will all be ok, and it's absolutely great not to be having to take antiemetics. I'm nowhere near the situation I was in a few years back with serious threats of NJ tube feeding, and inability to eat with life-threatening weight, so I feel really lucky in that sense. It's still tough though. Thank goodness for mints and acupressure nausea bands!

I saw the CFS team again last week, and am so pleased to have them working with me. I hadn't seen their physio before, but she was as nice as I'd been assured she was, and it was good to discuss things with her. It also made me realise I really need to review all the basics of fatigue management.

She's hoping to do hydrotherapy with me, as she has access to a pool and in deep water I'd be able to practice standing and walking with only 10% of my weight going through my legs. She just needs to check that they have the equipment necessary to be able to get me out of the pool if I've had a seizure, as the hoist they normally use has a seat, but they won't be able to sit me up if I've had a seizure (I'd just flop), so they'd need to hoist me flat IF a seizure happens. Obviously before they can take me in the pool, both me and her need to agree that the situation will be safe whatever my body decides to do! Particularly as feeling unsafe can be triggering for me. The water is at about body temperature, so hot, so we'll also need to be wary in terms of my dysautonomia, as it could cause my blood pressure to drop a bit, but I think that's a 'see what happens' situation. I'm a bit of a nightmare patient really..

Other stuff in terms of physio involved discussions around hypermobility, which I've known was an issue (at least to an extent) for a while. A few different people have commented on it (particularly physios). I need to be careful with my joints is the long and short of it, and try to keep things mid-range rather than stretching things. Hypermobility is associated with lots of my other conditions and symptoms, so it's not a surprise. I still don't know whether I have full-blown EDS, but it would come as no great surprise, put it that way. CFS, dysautonomia and FND are all associated with EDS, and my joints popping in and out of position, easy bruising, skin hyperelasticity and joint pain all point to EDS being a possibility, so for now it's just something for me to be a bit aware of, and try to avoid hyperextending joints, although that's easier said than done with a movement disorder that causes my body to contort beyond my control. The hypermobility itself can lead to fatigue as it takes a lot more energy for the muscles to keep joints in the normal position due to joint laxity causing instability.

I'm going to try to think of a way to distract my brain when my arms and hands are spasming out of control/I get loads of involuntary movement. At home I tend to go on my phone or iPad, as my hands manage well with those, but my arms are a particular problem during medical appointments, and that's not a particularly useful strategy in those situations..! My medical professionals are mostly already aware that I'm scared of them/struggle to trust them, without me being rude sat on my phone on top, haha. I've also been given a few little things to do to try to work on my core stability, mostly to try to ultimately ease my back pain to an extent- although for now they do aggravate it. For now, we're not doing anything in terms of my legs, because everything triggers agonising spasms.

Physio is going to be such a fine balance. Causing a bit of pain in the pursuit of recovery is fine and completely necessary, but I need to be careful not to push things beyond what my body can cope with, particularly given the added complication of seizures to avoid these days too. I need to avoid boom and bust and relapses, while also trying to regain some function.

After seeing the physio, I saw the neuropsychologist. A lot of that was discussing thoughts around where I'm at, why it's all come about, and how to move forward. I know I pushed my body to breaking point (along with help from a few other conditions/infection/possible reaction), and I recognise that. I realise that I don't always know when to stop. I know my body screamed at me in so many ways, and instead of listening to it, I quietened it down with medications, allowing me to push my body even harder. I know I pushed my body to the point where symptoms were only just bearable, for a long long time. I know it was ultimately probably my downfall. It's a hard mentality to break out of. I'm an all-or-nothing kind of person, and stubborn. It was hard when I was trying to keep up with peers academically who are physically well. It's hard to step back and realise the destruction you're causing. It's hard when you're managing to just about hold things together, to appreciate that your approach is wrong and maybe walking away with current abilities intact would be the more sensible option. It's only really possible to pick up on mistakes in retrospect. But you know ages (years?) ago when I said on here that no-one could prove my approach was wrong? Well, it was wrong. No-one could give me hard evidence that pushing to my limits would lead to damage, but my symptoms now speak for themselves, whether they're the result of damage or dysfunction (evidence suggests severe dysfunction of my body systems due to a downward spiral seems most likely). I know moving forwards that my approach needs to be different, and my attitude. I need to know when to say no. I need to learn to recognise when my body isn't coping. I need to look after myself and my body better. Logically, I know all this. I know I need to do some but not too much etc etc. But how do I put it into practice and keep myself on track? That, I'm not quite sure yet.

We also talked about the fact that preventing relapses is psychologically really important for me. I feel really strongly that this recovery needs to be for good. Small setbacks are inevitable, but hopefully massive relapses are avoidable. I need to adopt a different approach to managing my health that can ensure I don't end up back where I ended up in October. I need to make sure that huge drop in ability level never happens again. I can't keep going through this rehab process repeatedly- it's too hard in every way, on me both physically and mentally, and on those around me..

We talked about lots of things (obviously, that's the point..), and my fears around how I'll cope when I initially go into hospital was something we touched on. She's going to see whether she can introduce me to the neuropsychologist who will be able to work with me while I'm on the ward prior to me being admitted, but given that I don't know when that will be, it all depends. They're also going to see whether someone from the CFS team can be involved in an early meeting with the ward team so that we can discuss things to try to make sure everyone is on the same page. They're also willing to share information with the team on the ward taking on my care. The ward neuropsychologist is happy to speak to other team members on my behalf if I need information to be passed on, but don't feel able to discuss it. Honestly, everyone has been amazing, and everyone every step of the way has been trying to do things to put me at ease as much as possible and make me feel safer. It doesn't make it all easy, but hopefully it will be enough to make it bearable.

It's more recently than that that things have been really flaring, although they'd been increasingly tough for a week or so before, and I don't know why. I don't know whether once again I've pushed beyond my body's limits (holiday, appointments, trips out etc), whether it's simply the sleep deprivation, whether I have an infection of some kind, whether it's stress/anxiety about going back to hospital, whether it's just bad luck, or a combination of multiple things. What I do know, is that the flares are rough, and never seem to feel easier. At the moment, I have family visiting, so it's bad timing for a flare when I want to be enjoying doing things with them! I'm glad I've been at home while feeling so unwell, as fatigue-related stuff is tough in hospital, but I know I will deal with similar challenges in hospital while trying to work out limitations and push things a little. We'll obviously keep things as safe as possible, and the team seem to appreciate that my CFS and dysautonomia need to be taken into consideration, but an element of 'no pain, no gain' is going to have to be involved. Hopefully we'll get the balance right and get things moving forward, but without too much in the way of aggravating symptoms and set-backs.

I don't know when I'll get into hospital, but when I do, I'm not sure where I'll be able to keep people updated. If it comes to it, I might give my parents the email address to publish some blog posts here on my behalf, or if I can get online (fingers crossed for the sake of my sanity!), it might just be some Facebook/Twitter updates, but I'll try to keep you all in the loop as much as I can (I just can't say where is most likely, or how often it's likely to be!). There should be a place at the bottom still where you can sign up to get emails when blog posts are published (as they might not get shared across social media while I'm in hospital, it all depends, and I never publish on a schedule, and likely never will!), and social media details are in 'about me' at the side and at the top of this post.. Everyone is very welcome to follow wherever, but they are all chronic illness accounts, and I believe in openness and honesty, so it involves the good, the bad and the ugly- I'm simply not going to pretend everything is easy when it's not- so you've been warned!

Who knows when hospital will happen though- it could still be a while.. *shrugs*

Friday, 15 July 2016

Adapted cutlery product reviews- compare and contrast

I have been given these products by the sites mentioned to enable me to write this post. Although the products were gifts, all opinions in this review remain my own and I was in no way influenced by any of the companies.

I decided to write this post due to my own difficulties using standard cutlery (as a result of weakness in my hands from several conditions, reduced dexterity, and significant fatigue-related difficulties), and the fact I have become aware both of the number of potential options when purchasing adapted cutlery, and the difficulty obtaining useful advice or comparisons; I decided I'd like to write a blog post to help others in a similar situation to mine by exploring and demystifying the various options. Many thanks to all 3 companies for their enthusiasm, support and for providing the products to make this post possible.

NRS Healthcare Kura Care Cutlery Set from NRS
The main selling points according to the company are as follows:
  • Finger indents and profiled grip for comfortable use
  • Two toned styling – reduces appearance of the curved profile whilst making the cutlery more inclusive
  • Spoon has a deeper bowl for reducing spillages
  • Knife has a serrated edge for easier cutting
  • Dishwasher safe
I think they're all important points. Possibly except point 2, not because I think they look particularly bad (they don't), just because adapted cutlery never looks completely standard, but isn't a fashion statement at the end of the day, so I feel that's negligible really. It is the most discreet of the 3 sets though. The most important element is obviously the function, and I think the product is really great actually. The handles aren't quite as wide as the other 2 sets I'm reviewing here, although they're still significantly larger than standard cutlery so still help with weakness and grip, and particularly for small hands, the size is great. The thing that I think makes this set special, is the shape of them- I've found it really does help with hand position and control. I cannot use standard cutlery with my hands in a 'normal' positioning, but with these the shape and the increased bulkiness mean that I can hold them normally, or fairly normally, and my weakness and control difficulties are minimised greatly. Also, they are suitable for both right-handed and left-handed use; I swap hands depending on which hand is functioning best, and they all sit comfortably in either hand. They are also available in red, which can be particularly helpful for dementia sufferers, and there's a right hand angled spoon and a children's set available too.

Price at time of writing for the set including knife, fork and spoon (not angled version) is: £11.99 including VAT, or £9.99 without, for sale here:

Comfort Grip Cutlery Set from Stress No More
The main selling points according to the company are as follows:
  • Adapted cutlery for anti-slip grip
  • Easy grip cutlery to make dining easier
  • Comfort grip cutlery is kind on your hands
  • Ideal for elderly and disabled people; makes eating food easier
  • Dishwasher safe teaspoon, fork, knife and spoon with built in cushion-grip handle
These ones aren't specially shaped like the NRS set, but the size of the handle is really good and chunky. In terms of hand weakness, this set is really great. The easier grip, and a less slippy surface, makes this set much easier to handle than standard cutlery. You can also hold them however suits you, e.g. in a fist, and it's still comfortable and little grip power is required. I'd say this is the set that looks of the highest quality to be honest too. I also really like the fact there's a tea spoon. Again these ones can be used comfortably in either hand.

Price at time of writing is £9.99, available at:

Red Handled Cutlery Set from Co-operative Independent Living

The main selling points according to the company are as follows:
  • Range includes a knife, a fork, a spoon and a teaspoon
  • Large, ribbed handles for improved grip
  • Extremely sturdy stainless steel heads
  • Ideal for those with arthritis or poor grip strength
  • Bendable fork and spoon heads
  • Dishwasher safe for improved hygiene
  • Latex free design
  • Bold red colouring for easy recognition
  • Suitable for use in dementia care environments
I feel that this set is quite similar to the previous set in terms of the grip. Before they arrived, I thought the extensive ribbing could lead to discomfort, but they're actually much softer and more comfortable than anticipated. The feature that makes this set special, is the fact you can bend the heads of the fork and spoons, allowing you to put them at an angle that minimises the need for wrist/arm movement, particularly if your movement is limited in a predictable way. My own wrists bend backwards which can be frustrating when using cutlery, but this is not reliably the same unfortunately. While it's tempting to think you can just keep repositioning the heads to suit your current wrist position, you cannot reposition them more than 20 times maximum, so I think it's a case of finding the position that works best for you, and then leaving them alone. Also consider the fact that once bent, they will only suit use in one hand. It really is a great feature though, that will be really useful to some people! And they can obviously be used straight too if you'd prefer. Anyone with weakness will need help with bending them- the metal is thicker than it looks in the picture, as it's flat front to back. The spoon in the set is quite large, but this set does also include a tea spoon. The knife is a rocker knife, altering the movement required, and helping significantly with weakness- you don't have to lift the knife from the plate so much which is good! I'd say this set is particularly great for weakness and restricted wrist/arm movement.

Spoon, fork and teaspoon are currently: £2.88 with VAT relief, or £3.45 including VAT. The knife is £3.29 with VAT relief, or £3.95 with VAT if not eligible. Available here:

Which set do I think is best? It all depends on what exactly you're looking for really, and on your specific impairment- all 3 have their own merits. For limited wrist/arm movement, I'd recommend the red handled set due to its bendable heads. For the most comfortable/those with the widest handle, particularly if you hold cutlery 'abnormally', I'd say the comfort grip set. For the most ergonomic/ones that fit most naturally in your hands and help with control, the Kura Care set. It all very much depends on your particular difficulties, and if you have a changeable condition, several different sets might actually be the way to go!

Any questions do feel free to ask and I'll help if I can!

If you have a product or products that you would like me to review, please drop me an email at

Thursday, 14 July 2016

Back to hospital I go!

I found out on Wednesday that I'm going to be admitted into hospital again.

Shocked is an understatement. I wasn't expecting it at all. Not one bit. Even now it doesn't feel real.

I'd gone to hospital for an outpatient appointment in a spasticity clinic with a rehabilitation medicine consultant. I thought it was a case of assessing whether I had spasticity and if so deciding whether to go down the route of Botox injections or muscle relaxants. I thought that was as drastic as it was going to get..

I arrived at my appointment to be greeted by the consultant, another doctor, and a neuro-physio.

As some of you know, I have medical/post-hospitalisation PTSD, following some traumatic experiences and an incident where I was treated abusively by 2 members of staff. Hospitals and I don't mix well, so I was pretty anxious.

She started taking a bit of history about how I ended up how I am. It's always hard to know where to start given that I've had chronic conditions since 2009, but all my new neuro-type problems started in October 2015. But I explained a bit, and answered some questions.

I told her how things had progressed over time. We talked about my chronic fatigue syndrome and neurally mediated hypotension, my loss of mobility over time, and then what happened in October. We didn't discuss the details of all that happened during my hospitalisation to a great extent, but I told her a bit about what happened.

We then discussed my medication to an extent. She was horrified by my list, given my age. There are concerns about my meds, and they think they need to get me off some of them, as it's impossible to distinguish between side effects and symptoms. One of the meds I have 'as needed' that I was taking quite a lot at one point in hospital, apparently can cause Parkinson's if used regularly, so they're not happy for me to take that at all. It's thankfully one that I never really take these days, as I find it pretty ineffective (always have done!). I used it less once my nausea was controlled by the mirtazapine. My nausea is no longer controlled, but I still don't see the point in taking a medication that I don't find helps.

We discussed my level of mobility and the way I was able to transfer. (I can't stand at all, but can do pivot transfers or use a slide board)

She asked about bladder and bowels (both fine but doctors are seriously obsessed with these!) and allergies and all the really standard stuff..

She asked about how my control difficulties (particularly of my hands) and spasms felt. I explained that what I try to do and what my body does is different. (This is completely typical of functional neurological disorder, as it's almost like crossed wires- the messages are wrong)

I was asked a little about my sleep- currently difficult (used to sleep loads of Mirtazapine, but not now!).

Paragraph trigger warning: depression and suicidal thoughts
At one point we touched on my mood which was a bit awkward, as I said I'd been depressed and was outright asked whether I'd been suicidal or had suicidal thoughts. The true answer was kind of yes to be honest (a week or 2 earlier- possibly medication related), but I hadn't properly admitted them to anyone. I was reluctant to let on and it was a bit of an unexpected question in this type of appointment, so it was hard to answer, but I think I somewhat indicated that my head had ended up there but a change of medications has meant that I honestly don't feel that way anymore at all. I really don't want to die, I just didn't want to live this half-life with suffering and lack of independence and fear. I wasn't satisfied with my quality of life, and couldn't see how things would ultimately work out in a way I could tolerate. But I'm tolerating things much better now, and am seeing things far more rationally. Once my meds were sorted, I could see a way forward, felt more hopeful and felt more able to face my difficulties and rehabilitation. Please, if you ever feel suicidal, or even start considering it, please seek help; it's likely to be a temporary feeling- don't act on it, please! I didn't want to live any more but have completely come out the other side- with the right help, it's absolutely possible that you'll no longer feel the same way, whatever the difficulties in your life.

We then got to the stage where they needed to examine me. This was incredibly anxiety-provoking for me. I wheeled over to the examination bench, transferred, and they moved my wheelchair away to give them access. Bare in mind that I've not seen any new doctors since my PTSD arose, and I freak out with ones I've known years. The 3 medical professionals gathered round the bed and a screen was put across incase anyone came in, but it meant shutting off my parents to a large extent. I would've rather not had the screen, but didn't feel able to say anything (despite the fact I know they were all lovely and wouldn't have minded!). Everything that was done was familiar to me as I've had a lot of obs taken and neuro exams over the years! Touch, and being moved around, is difficult for me. It's also hard when I can't control my muscles to do what they want me to do (they're trying to test the strength of movements, but activating and maintaining the right movement is really tough with my FMD). Some of it was incredibly painful, as it triggered spasms. At one point she needed me to close my eyes- I wasn't comfortable with that at all, as closing my eyes has been triggering for me just recently (as it's reminiscent of seizures, and most of my traumatic experiences have been during seizures), and trusting medical professionals not to do anything to me or hurt me with my eyes closed is inexplicably hard. I can't even close my eyes in the daytime in my own home just at the moment, so this was close to torture for me. But I managed it to an extent, although I think she might've done more checks with my eyes shut had I not been so clearly uncomfortable. When the lovely doctor asked, I just sort of looked at her, unsure whether to say that would be too triggering, or not. I wanted to co-operate, but some things are inexplicably hard for me. She was very aware how tense and anxious I was, and the difficulties I was having trusting them. She kept trying to reassure me, and I think at one point she actually said 'what do you think I'm going to do- hurt you?', and I felt like saying 'well I don't logically think that, but my body definitely does'. It's not that I distrusted her or either of the others specifically, it's just that I know from experience that there are health professionals out there who will hurt you, and that's not something you just get over. None of my freaking out is due to conscious thoughts or anything rational, it's due to things reminding me of traumatic things I've been subjected to in the past. Reflexes were very brisk due to anxiety. Blood pressure was normal due to stress (normally low). Reflexes on the bottom of both feet were completely absent, despite several attempts on each- they said they were 'completely mute', and kept asking whether I could feel it, which I could (haven't had any significant sensation problems at any point). There was significant weakness, particularly in my legs.

They then wanted me to attempt to stand, and I agreed to. The physio trapped my feet and blocked my knees, and I held onto her shoulders. All very much something I'm used to after all my weeks in hospital. We then attempted to stand me up but my weakness and the lack of control of the right muscles is far too severe. We had several attempts, but it was clear it was never going to happen, and the neurophysio eventually made the call that it wasn't going to work. We couldn't get me on my feet despite the support of several people and significant effort. All the touch and invasion of personal space, plus pain and effort, made me feel a bit weird and I was quite spasmy and a bit spaced out, but no actual seizure thank goodness! Just had a bit of time leaning on and being held up by 2 people I'd just met.. Which in itself is pretty distressing for me. They couldn't let go because I would've been at definite risk of falling from the examination couch, but I did struggle with them holding onto me. I think we were all relieved when I was safely back in my wheelchair!

We then sat round to discuss things.

She said I don't have spasticity, so there's no need for Botox or anything. But she said she was more concerned having examined me than she was beforehand, despite the lack of spasticity. She recognised my very significant level of disability and the horrendous affect it has had on my life, and the lives of those around me.

She broke the news that they would need to see me as an inpatient, as my rehabilitation needs are far too significant to be managed in the community. I can't get the really regular input from physios etc that I so desperately need outside of a hospital ward. I need trained people doing passive movement with me and things to begin with. They want me to be admitted onto the neurorehabilitation ward in the hospital. There's no real other choice, and I'm incredibly lucky to be given this opportunity, as it goes against the standard admission criteria, but my need is too significant to be ignored. She said I can't get the help I need to be able to make decent progress without being taken in.

But it's terrifying. Truly and utterly terrifying. I developed PTSD due to the traumatic experiences I had in hospital during my 10 week hospital admission last year. I've had incredibly bad experiences since that have worsened my PTSD significantly. I really don't cope well with hospitals.

The latter part of the appointment is a bit of a blur to be honest. I know they said there would be regular (weekly?) meetings, which my parents will be able to attend with me if I want, and I'll be fully included in everything. Everything will be focused around helping me to achieve MY goals. So that's all fab. There will be physios and OTs and psychologists etc. Everyone will be working with me to achieve the function I want and require.

They're going to be seriously reviewing my meds, as some of mine can potentially cause dystonia and other symptoms, and they also think my meds are potentially contributing to my fatigue. I have serious concerns about how I'll cope with bad pain flares etc as a result of any changes, although I think changes will be managed gradually, and I do find it hard when a doctor doesn't know the extent of what I've been through and how things were when I was put on the medications.. BUT I'm on board with what's been said, and at least as an inpatient things can hopefully be dealt with swiftly if they get out of hand and unbearable. There are meds like pregabalin where I'm on the maximum dose, but think I have become tolerant to it- it helps to an extent, but I'm still in significant pain; doctors keep wanting to increase it, but they can't with me being on the maximum dose already.. It would be good to be able to start over with it, or move to something different that might control things better, as I'm not sure my pain management is optimal right now, but I also know we tried to reduce my pregabalin in hospital before and it didn't go well at all.. I ended up in absolutely horrendous agony. I'm not looking forward to potentially going through the same again. It wouldn't be an overnight process- it would certainly take a while to be managed appropriately, and I'm not even sure it will be what they choose to do with my meds, but if we can get my meds as minimal as possible, but managing symptoms as well or better, then that's certainly my hope.

I asked whether the consultant trusted every member of the team on the ward, and she gave me her word that she absolutely does. She said that if she was in an accident tomorrow, she'd want to be taken to the ward where I'm going. I know it seems like a strange question, but due to past experiences, trusting medical people is really tough. Sometimes I ask a question not necessarily to hear the response, but to see the way in which they respond. There was no hesitation or doubt in her voice- I feel she was telling the truth, she really does trust them. The other 2 members of staff were also in agreement. None of them will have seen the staff from a patient perspective, but it still reassures me to an extent.

As I was clearly very anxious about the whole thing, the physio took me up to see the ward after my appointment before I left. By the time I got up to the ward, tears were streaming down my face- it was all such a shock and so overwhelming and I was terrified. I knew I didn't want to go, but also knew it was necessary for my physical recovery. I knew I couldn't turn down the opportunity, but I am so afraid of the idea.

It's a small ward with only 12 beds. Some are rooms with up to 4 people, some are individual rooms. I asked whether I could be put in a room with others, as I think I'd feel safer that way, as there are people aware of you and those that are with you, at all times. I feel that that way there'd be less risk of anyone doing anything to me that they shouldn't. Hopefully. They said they couldn't guarantee it, but that they'd make a note of it, and it would be taken into consideration. Given that most people would prefer an individual room, they said there should be a good chance. All rooms are single-sex. There's a day room which looks alright, and I'm considering spending quite a bit of time in there, as I think I might cope better there than in the standard hospital bed/chair area, which just screams hospital. I'll see when I get there though. Probably depends who I'm sharing with, what I'm wanting to do, how I'm feeling physically, and how I'm coping with mixing with people, and different aspects of the environment. Yeah, I'm overthinking everything- I know.. 

The gym has equipment for passive exercise and standing frames and parallel bars etc, so there should be access to all the equipment needed. None of it is nice looking though, and a little bit frightening.

Now that I'm having far fewer seizures and have far more control over them, I feel that I have fairly good rehab potential with the right help, as do the team, and this seems like exactly the right help, with plenty of input from all the professionals needed.

The consultant was so lovely. She said it would be such a waste to leave me in a chair and functioning as little as I am, and not give me the help needed to fulfil my potential, both for me and my family, and for society. It was such a nice thing to say and meant a lot. She seems really keen to help me get my life back on track in every way, and helped me see that I can have a future- something I so desperately need to hear and believe. I have some use of all my muscles, none of them are completely paralysed, they're just weak and there are significant problems with control, and some triggering of spasms, so there's going to need to be a lot of retraining. Progress isn't going to be rapid and over-night, but she believes I have the potential to make a significant recovery. That belief in my rehab potential means the world. It's worlds away from the 'but you're functioning well from a chair' response I got from my consultant neurologist last time I saw her. I just hope the team's hope and confidence in my ability to heal doesn't diminish, as happened during my last hospitalisation. This consultant said she won't give up on me, and the team will fight to help me get where I want to be. She seemed to genuinely care, as did the other professionals. It means so much. My mum welled up, delighted that someone was offering me some real help, and her and my consultant hugged at the end of my consultation. I wasn't up for hugs, but she put her hand on my arm and wished me all the very best, and I thanked her. And I truly am thankful, just terrified too..

The actual consultant I saw is sadly only around until the end of the month, due to personal circumstances, but she's hoping to get me onto the ward before she leaves. Regardless, she said she'll leave a treatment plan of sorts to be followed by the consultant taking over and the rest of the team. Although largely a plan will be put together once I've been assessed by the different members of the team on arrival. She said she will be in touch to check on how I've got on on her return, which again was really appreciated.

The physio who took me up to the ward was also so, so kind. She said if I ever needed to speak to someone or see a familiar face then she will be around a lot, as she is a physio on the ward and her office is on the ward too. She was very willing to answer all my questions, and spend the time showing me around the ward to try to put me more at ease, which meant a lot. She genuinely made it seem like staff will be really approachable and I'll have people supporting me through my rehabilitation. She said if I had any concerns just to speak to a member of staff straight away and they'll work with me. It seems like most places are fairly visible from the nurses' station (where there's normally multiple staff), so hopefully that will help me feel a bit safer. I will also keep my wheelchair with me at all times, and I have the ability to get around the ward a bit independently these days, so I'm not going to be stuck in my bed and lacking any autonomy.

I'm going away with some family today for a week, but will then be admitted anytime after that, probably at short notice. I'll have to pack a bag and get things sorted and ready when I get back from holiday so that when I get the call I can head in without any added stresses.

My parents will be able to visit me regularly, and there's an area where they can bring my dog to meet me. I have a friend who works at the hospital, so hopefully she'll be able to nip in to see me some days too, which would be fantastic.

I've looked online and I should be able to pay for WiFi access. I definitely need Internet access to be able to cope! There are TV systems too, but I know I couldn't manage those when I was in hospital before, so I'll just have to see what the set-up is with the screens and whether they're accessible for me. I might have to rely on catch-up on my phone and iPad if not, which is fine. I'll take colouring too, and anything else I can think of for distractions.

It feels weird, because I have far more knowledge about hospital life than I had when I was admitted last time. Last time I was very severely unwell when I was admitted, and incredibly disabled, with very little understanding of what to expect. This time, there are elements of the unknown because it's a different ward, completely different staff, and a different type of ward (neurorehabilitation rather than acute neurology), but I know what to expect to an extent, and have had time to get over the shock of my actual condition. Apart from the massive issue of my PTSD, it should be easier this time round.

From what's been said, the elements I found so difficult last time (decisions being made about me and not being included etc), will not be repeated this time. They've said I'll be included throughout the whole process and people will always be able (and willing!) to discuss plans etc. Of course, despite plenty of reassurances, I have significant concerns about what all the individual healthcare professionals will be like and how much they'll understand my conditions, and how they'll respond to things, but I know I need to take this leap into the unknown in order to give myself the best chance of a decent recovery. My parents aren't far away, so if needed I'll be able to get them in to support me through things, or if I'm falling apart. The physios that I have met seem really lovely, so hopefully I'll get to feel comfortable with most of the team. I really do think everyone is going to be really supportive, particularly as they realise (to an extent) how psychologically challenging this is for me. It's so difficult to have PTSD related to medical stuff when I'm disabled and medical stuff is going to be a significant part of my life for a while. I never thought I'd be thrown in at the deep end like this, but my mental health is also being negatively affected by my lack of progress, and this admission should give me the specialist support I need to really move things forward physically, and regaining abilities will hopefully really positively affect my mental health. I wouldn't say I'm depressed at the moment, but given how badly depressed I've been so recently, I need things to be moving forward to reduce any risk of another relapse, which is something I'm very keen to avoid!! It's going to be hard on my PTSD, there's no doubt about that, and I might go back into a trauma response and/or quite dissociative (although being a bit detached and oblivious to my distress might not necessarily be a bad thing! At least initially anyway..), but if I can get through, with support, then this could be the help I need to really turn my life around, and open opportunities and a normal life back up to me!

The thought that I might get a decent quality of life back is incredible.. I'm terrified, yes, but also hopeful that this could be the turning point. I desperately needed hope and I now have reason to. They're going to help me. They can see that my life has fallen apart and they're going to help me piece it back together.

As frightening as it is, I'm incredibly fortunate to be being given this opportunity. There are people who would give anything to get the full-on, multidisciplinary rehabilitation that I'm being offered. I'm not going to waste it!

Thursday, 7 July 2016

Medication change, update etc.. (Mostly mental health)

It's now 9 months on from my first non-epileptic seizure (or the dystonic reaction that triggered them- debate with my doctors, they don't know) and being admitted to hospital. The last year, and particularly the 3/4 of it with FND, has been such a rollercoaster: physically, mentally and emotionally. But, I've lived to tell the tale, I have friends and family that love and support me, and professionals doing their best for me. I don't pretend a single day is easy, because it isn't at all, and the pain and suffering are overwhelming at times, but I have amazing people in my life riding this rollercoaster with me, or willing to step aboard as needed. My PTSD is a constant nagging reminder of how awful humans can be at times, but although my PTSD doesn't like me to believe it- they are certainly outnumbered by the good ones. No-one will ever convince me that there aren't bad people, that they aren't where you'd least expect them, or that I won't come to harm because of them, because there are, they were, and I did... but I can keep reminding myself that as well as the bad, there are the good, and past experience certainly can't disprove that, particularly after all the love I've been shown during these tough months. 

My level of disability still isn't something I've properly come to terms with. Even after 9 months, it hasn't really sunk in that I can't currently safely stand up. I can't explain it. It's my every day experience, but that first seizure may as well have been yesterday with how abnormal it all still feels. A lot has happened, and things have changed and evolved, and I've learned a hell of a lot, but none of it is behind me really. 9 months I've lived with the threat of seizures constantly at the front or back of my mind. For 9 months I've been on wheels full-time, apart from the limited number of steps I took during physio sessions while I was an inpatient. But I still find both of those things, and many more, very challenging. There's a huge, huge difference between part-time wheelchair/scooter use and using a wheelchair full-time. And I know that I'm incredibly fortunate to be able to transfer completely unaided- there are people who are far more severely disabled than me. Yes, sometimes I'm completely unresponsive for hours at a time and then only able to move my eyes (without full control of my blink) for a while longer, and that's pretty much at the extreme end of disability, but at least I get to experience something far closer to able-bodied the rest of the time, which is the vast majority. I wrote that and then thought 'some disabled people would argue that their lives are no worse than those of able-bodied people' and they're entitled to that opinion, and I'm truly glad they feel that way, but I can't say I agree to be honest. Partly that's because I've known different, partly that's because I'm ill and in pain and I suffer (which certainly isn't always the case with disabilities), and partly that's because I'm very aware that there are still significant differences in opportunities and a lack of accessibility. Given the choice, I'd opt to be able-bodied again in a heartbeat, but I know of disabled people who wouldn't, or would have to think about it. Neither is right or wrong, but I can't see me ever changing camps on that one.

I've adapted to live with so many new symptoms/conditions over the last 9 months, but I can't say I've always coped well.. The last couple of months I've coped fairly terribly in all honesty, but things are complicated, and sometimes we have to hit rock bottom before we can find our way back up.. After my last post, my mood continued to spiral downwards, kind of into unknown territory to be honest. I wasn't in a good place at all..

Last Wednesday my community OT came and I started using my Butterfly transfer board. To be honest, I was initially a bit disappointed as it seemed quite tricky as I wasn't sure where to hold onto and it seemed like not much of an improvement, but with a bit of perseverance and practice, I've found it easier and it's helping reduce my upper body pain to an extent, although it's not useable for all transfers. Being able to stand briefly for transfers would make a big difference, but I'm not there at the moment, so for now this definitely helps. While she was here we had a bit of a chat about how I was getting on generally, and I had to admit I wasn't making much of an effort with things. I didn't admit to quite how bad my mental health had become, but I think she realised to an extent that I was struggling.

On the Thursday I spoke to my long-term CFS consultant. We did a telephone appointment due to me being out of area and the journey would've been tricky. I admitted to him that my depression was a problem. I also said I wasn't happy to increase my mirtazapine (which was my current antidepressant) because I'd put on so much weight so quickly because of it, and it gives me acne, and increased dosages in hospital made me really unwell and my seizures much more frequent. He agreed that that wasn't a good way forward after I'd explained, but said I'd need to discuss with the GP I'm seeing here in that case, as he obviously couldn't start me on a different medication over the phone. We had significant discussions about uni and career options etc too. I definitely won't be starting back at uni in September. The earliest that's likely to be realistic is September 2017, but I'm going to start looking around at career options with my current qualifications, to make an informed decision about whether to put myself through the significant stress, and relapse risk, of starting back at uni. We'll see. But I'm starting to come round to the idea that even if I can't make it back to uni or my original career choice, then it's not the end of the world. There will be other opportunities that might be better suited to my circumstances.

After speaking to my consultant on Thursday, my parents took me to a farm place with a farm shop/cafe and animals (yes, for children, but I'm still a big kid!). The wonderful staff agreed to get a Guinea pig and rabbit out for me to cuddle- it was fab. Despite being in the depths of a depressive episode, I smiled, and loved it. It's so calming and therapeutic cuddling little furries! I'd love a couple of guinea pigs again, but I'm not able enough to look after them myself at the moment, and mum already has me to look after and isn't well herself, so no luck convincing the 'rents so far, but I'll keep trying..😉

On Monday, I saw my GP about my low mood. I was anxious about it. An hour before my appointment, I quickly typed up a sheet listing my meds and about why I was there (typing is easier than writing) and basically just mumbled something and handed it to him when I got in there.. I then spent the next 5 minutes staring at my hands in my lap and taking my rings on and off my fingers nervously. He eventually started asking some questions and I answered them. But I can't do medical appointments these days- they stress me out. He was nice enough, but has limited understanding/appreciation of some of my conditions (which is fine and to be expected with a complex history like mine, but tricky). He started asking about whether I was walking plenty around the house (a conversation we've had before), I explained again that I couldn't stand, and he said I'd be getting increasing muscle wastage the longer I'm off my feet- not what I needed to hear when I was struggling with feeling unable to ever recover.

I was there about my depression, but he basically said that pills 'won't make me happy'. 'I'm my own best doctor', and 'medications and professionals can only take me so far' etc. He's right to an extent of course, but I was fighting my mind as hard as I could, and was failing dismally- more than anything I needed hope that things would improve and I wouldn't always feel so awful, and that wasn't the message I got in all honesty. I'd ended up at the doctors because I was scared by just how depressed I'd become and some of the thoughts I was having, yet I came away from the appointment feeling possibly more depressed than prior to it, and feeling invalidated in a lot of ways, unheard, and misunderstood. I've been badly depressed once before and the right medication helped hugely (citalopram, but I was taken off that in hospital to try the mirtazapine both for my nausea, and because of concerns about interactions). Sometimes brain chemistry has just gone haywire and needs a bit of help to get back on track. Meds are not always the answer, they're certainly not for everyone, and they don't get rid of the problems in your life/underlying issues, but the right medication can be literally lifesaving. I realise that it's natural to be (perhaps very!) fed up in the circumstances I've found myself in, but it wasn't just my circumstances- they hadn't changed- depression is an entity all of its own, and circumstances are largely irrelevant to be honest, although I was an easy target as someone severely disabled, in chronic pain, with an unknown prognosis. Once it took hold, it was easy for depression to convince me that life would be incredibly arduous and painful and I'd never amount to anything.

Although I didn't feel that my doctor grasped just how low and desperate I was, I was there to get my antidepressant changed and he did do that. To prevent interactions he's also taken me off Amitriptyline, which was to help nerve pain. I think he gave me the choice actually, but I hadn't really considered whether I wanted to come off Ami, so just kind of agreed without much thought. I get more nervous about interactions than I used to after all my problems in October (that led to my current level of disability) were arguably caused/triggered by medication(s). It would be nice to stay off amitriptyline if at all possible because it would mean less risk of interactions and serotonin syndrome etc, but I'm just going to have to see what happens with my pain over the next few days and weeks. I've been moved from Mirtazapine to Sertraline to try to lift my mood- I'm pleased, and think it was an absolutely necessary switch, but am also concerned about my nausea potentially becoming unmanageable again..

Mirtazapine has been incredible for my nausea and appetite! I've put on a lot of weight very quickly which was amazing, and very much needed, although it became a concern as time went on. I don't know what will happen now in terms of weight because my GP said pretty much all antidepressants can cause fluid retention and weight gain to an extent, but I never experienced that with citalopram, and citalopram and sertraline are closely related (SSRIs), so we shall see.. My weight gain definitely isn't just fluid retention though, it was caused by eating lots, due to my lack of nausea, an insatiable appetite and constant drive to eat, caused by the mirtazapine. I'm under no illusions- I ate the food to make it happen (although immobility will have contributed), it wasn't some weird kind of magic. It would be nice if my weight just stabilised and stayed as it is, and my appetite stayed similar, but with a few less sugar cravings! At the moment it's mostly a case of wait and see, both what happens because of the sertraline, and what happens because of the lack of mirtazapine.. Only time will tell whether the medication change was a good call..

After nearly 3 days on the new medication, I'd say there are definite pros and cons. My depression was the absolute priority, as I'd largely lost the will to keep fighting, and in all honesty pretty much lost the will to live, and the new medication has definitely helped that already, which is a huge relief. To be honest, I'm questioning whether the mirtazapine was actually somehow having a negative effect on my mood towards the end, given how quickly I've noticed the difference. I feel much, much more like me again. As hard as things are, I can have a laugh about things again and my mood is pretty normal. It's been a bit more difficult getting to sleep, but I was awake til 2am even on the Mirtazapine, so although the mirtazapine should have helped with that, it's been no great loss in that regard. I've woken up significantly earlier feeling far more alive which is a big positive, and one I hadn't even particularly considered. I'd got so used to the horrendous mirtazapine-induced grogginess after months of it, but it's amazing for that to be gone!! And I think that in itself has helped my mood too.

My biggest concern was my nausea, and that's back- ugh! I've felt really sick and been retching a lot again.. But at the moment, the nausea is actually far preferable to the depression. I'm hoping it might ease a bit once I get used to the new medication and any side effects from that reduce, but mirtazapine was also an antiemetic, that's why I was put on it, and sertraline isn't. Those of you who know me well and/or have been following my blog for a while will know what I've been through with my nausea, narrowly avoiding NJ tube feeding etc, so it's a big concern, but at least my weight is much, much better at the moment. I did wonder whether I could use a small dose of mirtazapine simply as an antiemetic but that is more risky with interactions etc again, plus I don't know whether a small dose would work, or what degree of side effects I'd get at a lower dose, so we'll see (I'd obviously discuss with my doc first!).. Hopefully that won't be necessary. May have found the way to lose some of the mirtazapine-weight though, haha.

When my nausea was so awful a few years ago, I was told it was probably gastroparesis but I decided against a referral for to a specialist for this, because I was suffering from serious test-and-hospital-fatigue so another referral and more prodding and poking really didn't appeal, plus it wouldn't have changed anything in terms of my treatment, and at that point I'd found a medication that helped quite a bit and I was managing to eat alright-ish. When I had to come off that medication in hospital, and lost weight and pretty much stopped eating again, leading to me being tried on Mirtazapine, it seemed pretty miraculous to be able to eat loads and be practically nausea-free. It was a huge relief, but distracted by other significant challenges, I didn't give it much thought. On the return of my nausea, I thought yesterday that if I was managing to eat so much and just get a bit of reflux while on Mirtazapine, then it couldn't be gastroparesis, surely. So out of interest I googled 'Mirtazapine gastroparesis' and a load of scientific journal articles popped up about success of Mirtazapine at treating different cases of gastroparesis, including those that didn't respond to the standard treatments. Oh. I haven't read any of the actual papers, but it's interesting nonetheless. It's definitely not a medication without side effects, but there are times when I'd have given anything for a medication to give me some relief from the nausea, even if only temporarily. All those months with the threat of tube feeding hanging over me because my weight had become 'dangerous', and no guarantees that even that would be a success, the situation was truly desperate. Mirtazapine hasn't ultimately worked out for me, but it's certainly proof that the right medication can get my stomach doing its job/rid me of my nausea! Even just that gives me hope.

The other medication change- reducing my amitriptyline (have halved for now, will stop completely in a day or 2)- has led to increased pain, but nothing too drastic. It's been mostly hip pain, leg pain and back pain.. It's the first time I've been off amitriptyline since my back was hurt, so I hadn't realised it had been helping that.. I'm taking the odd painkiller, but I'm trying to avoid taking tramadol as I'd rather not be taking that daily again, and I know the pain will be ongoing. So although the pain has been bad, I've had other meds I could've resorted to and haven't, so not a disaster so far which is good!

The next potential medication change I'm waiting to see about, is something for spasticity/spasms, depending on the opinion of a specialist when I see her. I've had an appointment through to see a consultant in rehabilitation medicine in a 'spasticity clinic' next week, to assess whether I do or don't have spasticity in my legs, and what (if anything) we do about it if I do. At the moment, if I do certain things with my legs they go into agonising spasms, and it makes it difficult for me to do stuff, and difficult for physios to do things with me. The neuro-physio was keen for this specialist to see me to assess me in terms of what they should be doing with me too. So hopefully it'll be a beneficial appointment and I've been told she's a good and empathic doctor. It doesn't mean I won't freak out about the appointment because I will (hospitals/medical stuff and I don't mix well these days, if only that meant I got to opt-out of medical problems!!), but it's always nice and reassuring to hear positive reports about a doctor in advance!

Yesterday another self-propel wheelchair arrived, which is for upstairs. My stairclimber gets me up the stairs, but then I need to transfer into another chair, having left my main chair at the bottom. I had a chair with little wheels that my parents could push me around in and I could move it a bit by pulling on things around me, but it'll be great to finally be able to move around my room independently and get around upstairs without help. That's if I can negotiate it through all the doorways etc!! Fingers crossed..

Today I was back at the CFS service seeing their OT and neuropsychologist, and it was positive and helpful, despite also being quite tough and distressing at times. I'd met the OT once before, but feel I'm now getting to trust her, which is really important for me, and met the neuropsychologist for the first time today, but she seemed nice and it was good to meet her while with someone already familiar, so would be happy (well as happy as I can be with a medical person and relative stranger) to see her alone in future. Both of them are so understanding and unfazed by all my problems, which is fantastic. The rest of this has been typed over the last few days, and I don't feel well enough to go into today's appointment more than that just now, but it went well and I'm happy with the plan going forward, with input from various different members of their team.

My head has not been a fun place at all just recently, but the last couple of days on the new medication, and my appointment today, have given me some hope back that I can do this, I can get better. I might never be 100%, I probably won't be in all likelihood, but I've known that for years- that's something I can come to terms with and learn to live with. I just need to learn to be kinder to my body and encourage its recovery, to whatever extent is possible, rather than constantly punishing it for not managing what I'd like.. It's not Jess vs Body. I need to be kind to my broken body, because it's doing its best, it's the only one I've got, and berating it isn't going to solve anything!

Who knows what degree of recovery is possible for me, but there are clear areas needing attention, so the obvious thing to do is to start to work on those in the ways I can, as much as I can manage, with advice, guidance and help from professionals, and then see where things go from there.. Onwards and upwards.

(And yeah the irony of me including a picture of a staircase when I'm a full-time wheelchair user at the moment isn't lost on me!😅 I can't take a literal step, but I'm as capable of taking a metaphorical step as anyone 😉🙌🏻)

Tuesday, 21 June 2016

Focusing on the CANs not the CAN'Ts

This week I had my CFS service initial assessment (I've had CFS since 2009, but had an initial assessment due to starting with a different team after moving areas). It was positive and the person I saw was really great. She spent a couple of hours with me, and got a good grasp of my current situation and how I've ended up where I am, and took time to understand things from my perspective. Some of what we discussed, I hadn't anticipated discussing, particularly trauma-related stuff, so that was quite hard, but called-for, and I liked the way she went about it- never pushing me into discussing things I didn't feel able or ready to, and never making me feel unbearably uncomfortable. I always find discussions around the mental health aspect of my problems (and the events that have caused them) difficult, but the lady I saw was understanding, empathic and supportive. I haven't come away feeling full of optimism and hope and positivity- she's not a miracle worker- but she's at least started getting me to think about manageable tiny steps I can start taking to try to turn things around.

At the moment, my mental health is pretty much in tatters, much like my physical health. I'm struggling with PTSD, anxiety and depression.. Yeah, there's no point me denying it (to myself or others)- my depression has relapsed.. It's not just been an isolated day, it's not just me being narked about my circumstances (although they're certainly not helping)- for weeks I've been feeling flat or tearful, and spend little time feeling anything else. The only other time my mood has been this low and I felt this hopeless was a year ago when I consulted my doctors for the first time about a depressive episode.. It was utterly horrific, and it's no easier this time round.. Worryingly I'm still on antidepressants as they are controlling several different things, they were keeping my depression successfully at bay, and there hadn't been a right time to try coming off them with my life in such turmoil, so I don't know what to think. It seems like they're not working, but I don't know what things would be like without them. I don't know if I can cope with changing anything about my meds (i.e. the dosage or type of antidepressant), as that's never straight-forward and always results in some sort of symptom flare- I'm not sure I'm strong enough to deal with that right now.. The last change to my medications increased my seizures from about 1 per week to 4-5 per day and I couldn't even sit up without losing my balance- so my concerns aren't unfounded, particularly as I fear we wouldn't be able to manage with me at home if my seizures increased to that extent again. Plus my current antidepressant is controlling my nausea, and I'm pretty much out of other options for that, and I can't cope with a return of my severe nausea and inability to eat.

I can completely see my mental health conditions for what they are, I'm under absolutely no illusions. But they're debilitating on top of my debilitating physical conditions, and I've lost hope. I can't see the light at the end of the tunnel. I see a vast mountain to climb and feel I have no physical or mental strength left to face it.

It's really hard when a very recurring thought is 'I hate my life'. And while I keep reminding myself of the many good things in my life, the things I'm thankful for, and the things I continue to enjoy, it's true that my life is currently very challenging and scarily far from ideal- that's undeniable. Its hard to struggle so much with every single task I do, when the vast majority of people my age either don't have to deal with it, or do it with absolute ease. It's hard to keep telling myself that things will get better, when I know logically that I actually have no idea how much better they'll truly get, and it could take a very long time. It's hard to convince myself to keep trying, when I fought so hard for so long, and it got me seemingly nowhere. I've learned the hard way that doing too much and trying too hard can be detrimental, and my pushing-through mentality has led to many a set-back over the years. Every time I've got back up, eager to prove my resilience and get on with life; keen not to let my conditions beat me. But you can only pick yourself up from falls and set-backs so many times before you can't take it any more, shrug and admit defeat, unable to see a way forward. That's where I feel I'm at right now.

But somewhere deep down there's a glimmer of awareness that the future may hold a life very much worth living; it may not be the life I've dreamt of in months/years gone by, but I can build a life with enjoyment and meaning. It's a tiny, dwindling glimmer of hope, but it's there. I haven't 100% given up on myself. I still desperately want to get better. But I'm struggling to find the will to battle through each arduous day with all the symptoms each of those days involves. I'm struggling to find the strength to deal with the challenges that are oh-so-present in my life as it stands.

I do still have some good days. I still have days where I can have a laugh and feel like the old me. And it's so important to notice and savour these days. But these days are sadly the minority.

I want to go to sleep and wake up miraculously fixed. But that's just never going to happen. The only way to get the recovery I crave is to work at it- slowly and painstakingly. Nobody can make it an easy, quick process or do it for me.

The lady I saw validated my feelings, and helped me see that they are understandable and to be expected to an extent, given all I've been through over the past year (and the 5.5 years prior to that!). She said that she'd almost certainly feel the same if she were me. But she also helped me see that I need to find a way to move forward from where I'm at.

There are things I can't do, but also beneficial things I can.

I am unable to walk, but I can move my legs a little, to start to build back some strength. I can't stand, but I can sit forward and up straight, working on my core and balance. My hands don't work like they once did, but I can use playdoh and use exercises to work on their coordination. My brain doesn't process things as it should, but I can challenge it and help it start to learn to work with my body again. I can't go out independently, but I can agree to go out when people are willing and able to take me, helping me become less isolated. I can't run in the fields with my dog, but I can sit and enjoy cuddles with him, which will lift my mood. I can't play the ukulele and piano like I once did, but I'm sure I can pluck the odd string of my ukulele and play a few notes on the piano, helping my hands and reminding me of things I used to enjoy.

It's easy to look ahead at my long-term goals and where I want to be and get overwhelmed by how impossible it feels to reach them. It's easy to sit back and feel defeated. It's easy to be frustrated by how far things are from where they were, and easy to become devastatingly demoralised by all the abilities I have lost. Depression has stolen my motivation and desire to do anything; anxiety has made me not even want to try, for fear of being unable to do things; I fear doing anything because of how easily a seizure can be triggered; my PTSD means I am plagued by memories of how badly things can go wrong. But doing nothing will only result in me becoming stuck where and how I am, which is not going to help me become more hopeful, and will definitely result in me not moving towards my long-term goals.

I am where I am, and as difficult as that is to accept, for now I just need to find it in me to start doing the bits I can do. I need to try to focus on the little things I can do to help me move forward towards achievable, non-overwhelming, manageable goals. Achieving these little goals will hopefully rekindle the hope I so desperately need. Right now the bigger picture is too demoralising to look at, so I need to focus on the here and now, while doing the tiny things I can towards making the future I want more likely.

It's easy to focus on the can'ts. It's easy to give up. It's easy to convince myself that I can't get back to where I want to be. It's easy to just curl up and want to block everything out. It's easy to see the mountain I have to climb, and hard to see the light at the end of the tunnel.

It's incredibly, incredibly hard to just accept things as they are, and keep doing the tiny things I can do to work towards some improvement, and really hard to see those things as hugely positive, but that's what I need to try to do. I've come to that realisation, but it doesn't make it easy- far from it. I'm dealing with so many  symptoms (mental and physical) every day- nothing I do is going to change that in the immediate future. When every day is a struggle, it's hard to think about doing things that will only be beneficial in the long-term. But if I want to rebuild my life, and see how far I can get with my recovery, I can't do nothing. I just need to start small. But I do need to start. And I can.

Life update

I recently put a fairly detailed update on my personal Facebook, which read as follows (adapted and updated slightly):

I spent a week away from home with my mum and my dog a few weeks ago which went well and was a bit of a break away from everyday life. And it involved cake, scones, goats and monkeys- so was therefore pretty perfect in my eyes!🍰🐒🐐 We were in the county where I grew up, staying with/seeing family friends from 'back in the day', which was really nice and a reminder of easier times! (In stark contrast to now where just to go away for a few days necessitated a trailer with a stairclimber, a wheelchair for upstairs, wheelchair for downstairs, a bath board, a toilet frame etc.. More equipment than was needed for taking me away as a newborn baby!)

I had my second physio session a couple of weeks ago at the local Hospital which was with my neuro-physio, the neurology clinical specialist, and a physio student, all of whom are thankfully really lovely. I was strapped onto a nifty machine (THERA-trainer Tigo) that is like an exercise bike that you use from a wheelchair, and a motor moves your legs around for you (it goes round whether you do anything or not) at the speed that you control from the touchscreen, but you can also actively cycle along and it will record any input from either leg (and it's designed to cope with spasms etc). I did 2 minutes one way and then 2 minutes in reverse, with a break in between, and actively contributed less than 20% of the time, yet I was in a lot of pain that evening and absolutely exhausted, which I was warned would be the case, but it still came as a surprise!😳 It's a very clever machine though, and seems a good place to start, with none of the 'upright-ness' that my body seems to despise so much, and it doesn't matter whether my legs choose to work with the machine or rebel against it (they do a bit of both). I need a machine the same/similar at home really, so that I can use it on a much more regular basis, but am not really sure of options at the moment (may or may not be able to get one funded through the NHS, and options in terms of the actual machine). It's becoming increasingly obvious that rehabilitating me is not going to be a quick or easy process, and my complex mix of conditions makes everyone rather hesitant, but the team were really pleased with how I got on in the session and my body's response to the new equipment was positive.

A really nice community occupational therapist came to see me a couple of weeks ago too, and she's sorting various things for me including transfer boards- she's coming back soon to look at/use the boards with me, and work out what works best. My pivot transfers are fine and safe (after 8 months practice, they should be!), but the banana/butterfly board is to try to reduce upper body pain. We also discussed whether options exist for moving me when I'm unable to move myself (which thankfully happens less frequently than it used to), but a hoist is the only obvious solution, and that's definitely not a route I want to go down as I really don't like being hoisted, so the OT is going to go away and think and see whether anyone she works with has any other ideas!

The absolute low point of the week before last was receiving the response to my hospital complaint about the abuse I suffered while unresponsive a while back. It was an agonising, upsetting and triggering read, and I'm not at all happy with the official response, but I just hope the 2 individuals involved seriously regret what they did, I hope my complaint helped them understand the significant implications of their actions, and most importantly, I really hope they might think twice before acting so inappropriately and hurtfully in future.. I sobbed inconsolably when I read the letter, and I still find the injustice of it all, and the imbalance of power, incredibly difficult to come to terms with. That people can get away with physically and mentally harming me simply because I couldn't give a visual description of the person that physically hurt me (my eyes were shut- I was seizing), as I wasn't 100% sure that it was the same person who later returned, and because it's 'my word against theirs' feels incredibly wrong. They've probably moved on with their lives now, content in the realisation they've got away with it, whereas I live with the implications of their actions every single day.

I've had my properly fitted wheelchair over 3 weeks now, and am pleased with it- particularly pleased that it's not black!!💙 I'm now meant to be getting a self-propel wheelchair for upstairs too, the other equipment from the OT should be here soon, and I recently renewed my blue badge no-quibble for another 3 years.. Honestly these things are considered good times in the life of a chronically ill/disabled person 😉😅♿️

I'm so incredibly grateful to friends who are continuing to make the effort to stay in touch and/or do things with me- it truly means the world.. Won't say more here, but you know who you are.. 💕 And anyone who hasn't been in contact for a while- I completely understand that life is busy, and I won't hold it against you at all, but it's always nice to hear from people ☺️ (Apologies that I'm not always quick at replying though!)

I'll be honest, things are feeling really quite tough at times. The constant symptoms, the uncertainty about my future, my level of disability, the passing of months with little progress, the being passed around between health professionals and waiting ages each time for any help, and my lack of independence, can easily become overwhelming, frustrating and demoralising. I'm trying to focus on the glimmers of hope, the many good things in my life, and the things I'm thankful for. It's hard to always stay positive with my life as it is at the moment, and it sometimes proves impossible, but I'm trying..
My current favourite quote: "Be strong now, because things will get better. It might be stormy now, but it can't rain forever." -  I'm waiting for my rainbow!🌧⛈⛅️☀️🌈