Tuesday, 29 July 2014

Lots of updates! Various appointments plus last few weeks

I promised an update on my other appointments, so here goes... (There's also a general update at the bottom)

Maxillofacial unit
My facial pain is bearable at the moment, having increased my pregabalin fairly recently, so we're leaving things as they are for now.

Asthma review
Peak flow was 390, which is really good for me. Agreed to keep medications the same.

Appointment went well. Among other things we discussed my rib pain and he thinks it's my intercostal muscles. I am trying some ibuprofen (alongside my other pain meds) to see if the anti-inflammatory properties help; he said it was what he'd use for 'normal' patients so it was worth a try. I said I wasn't keen to try anything stronger than tramadol and he agreed that they would flatten me.

Immunology/CFS Consultant
Appointment was really constructive.

I said my balance had got even worse, and he suggested I got a wobble board to practise my balance.

I said my temperature was all over the place and he said it is a common problem with CFS but nothing can be done.

I mentioned that I was concerned that my hands have been shaking at times, normally in the evening, and asked whether it was likely to be due to weakness. He agreed that it was, and suggested I squeeze a stress ball and/or use a gyroscope exercise ball to strengthen my hands and wrists.

I said that I've been having some speech problems. He says stuttering is common and he wasn't concerned but if it starts causing major problems I can be referred to speech and language pathologist for vocal exercises. He said that he felt there were other things more important to focus on at the moment.

I mentioned that a GI consultant had said that he thought it was possible I have gastroparesis, but said that my nausea etc hadn't been so bad recently so I wasn't keen to go ahead with testing at the moment. He said that if it flares up again, there is someone in a nearby city who looks into neurological GI problems that I can be referred to.

I mentioned my rib pain so my vitamin D is being checked and I've been on folic acid a while so my folate levels are being checked.

Most importantly we discussed my plans for returning to Uni and he agreed that a return in September can go ahead but that I should only do 3 afternoons per week to start with. I was VERY happy to get the thumbs up to start back, even if it is only part-time to begin with - yay!

I coped remarkably well living with friends for a week at my university city while I went to appointments. We had some lovely days and evenings out. I feel a bit more at ease with the idea of going back having managed relatively ok while I was there.

I wasn't managing to help out with anything really, and I feel bad relying on friends so much but I'm sure we'll work something out. I felt very aware that I need a lot more help than I did a year ago, and I also (ideally) need help that I'm not willing to accept. I muddled along ok though- I managed to keep my hair washed regularly and everything like that, which was an achievement. I've had a shower stool (for at the sink) and a bath stool (for having showers in the bath) delivered ready for September, and they helped. I was also pleased that I made sure I spent plenty of time resting.

My mobility and balance have deteriorated recently and I felt a bit unsteady getting around the flat- I need to find all the places to grab hold of/lean on and get my confidence back, but hopefully that will come with time.

I then went back to my university city a second time for my tilt test, and two trips so close together in addition to the tilt test itself, knocked me back a bit. The last week has been a bit rough.

I can't believe I've been diagnosed with Neurally Mediated Hypotension for a week already. I've been trying to look up information online but it seems to be sparse and there is real confusion in terms of terminology. I have come to the conclusion that Neurocardiogenic Syncope and Neurally Mediated Syncope are the same as Neurally Mediated Hypotension. I believe that these aren't the same as Orthostatic Hypotension; I think NMH/NMS/NCS involve a drop in heart rate in addition to a drop in blood pressure, whereas OH is only a drop in blood pressure, and it seems OH is generally seen in older people. Orthostatic Intolerance is different again- that's an increase in symptoms when upright, frequently seen in CFS patients, but it's a symptom rather than a condition. Vasovagal Syncope refers to simple faints- NMH makes Vasovagal Syncope more likely/frequent. Postural/Positional (Orthostatic) Tachycardia Syndrome is a condition similar to NMH; it is also a form of dysautonomia, but the heart rate increases by 30 beats per minute on standing- it causes similar symptoms but whereas NMH can lead to fainting, POTS doesn't. Not sure if that clears anything up for anyone and I'm not 100% sure of the accuracy of any of that, but they are the conclusions I have come to. It would seem there are probably some inconsistencies between specialists to be honest.

I've been tired this week. I've had a few nice days regardless, but have had some rough ones too. My rib pain has eased off a little but my facial pain is twinge-ing a bit, so swings and roundabouts really.

Emotionally I haven't particularly struggled to come to terms with my NMH diagnosis. It feels positive to know that I have it, because it opens up more treatment options.

The 2.5 litre per day fluid intake is really difficult. It's still a struggle every day, but I'm doing it. I'm finding it hard to find foods to put salt on, but I'm trying to have at least 1 high-salt thing per day. Tilt training is really tough- it makes me feel really rough and makes my legs really painful, they shake and my knees threaten to give up, but I'm determined to persevere. My tilt training times seemed to be rising quite significantly early on but they're fluctuating a bit now. Considering my first time was 4 seconds, I'm quite pleased to have broken the 10 minute mark a couple of times in the last few days.

I have no idea whether I should have seen an effect from the increased fluids and salt yet (apart from increased trips to the bathroom); I'm still hopeful that these will help, and am (sort-of) looking forward to my compression tights arriving to see whether they help too. At least I know that there are further options to try if these things fail to improve my symptoms.

Tuesday, 22 July 2014

Tilt test and additional diagnoses: Neurally Mediated Hypotension and Vasovagal Syncope

A while ago I was seen by a consultant who suspected that I had Neurally Mediated Hypotension from my symptoms, but she said a tilt test was needed to confirm the diagnosis. An appointment came through and my mum and I headed off for me to have it done yesterday.

I got called through by my consultant and she explained that I would be wired up to monitoring equipment and we would see how things went- I would be stood up for 20minutes and then if I felt able to be stood longer I would be given a spray of GTN (to dilate blood vessels) and then stood for a further 15-20minutes. She asked whether I thought I'd manage the full 40minutes and whether I was happy to go ahead with the test- I said that I would see how things went, I couldn't predict how I would cope with it, but that I was happy to give it a try.

They pulled the curtains round and I lay on the tilt table, which just looked like a bed with a platform at the bottom. My feet were against the platform ready to be stood up. I was wired up to an ECG machine (just 4 leads) and blood pressure monitoring equipment by a lovely nurse. I was then strapped to the bed and a table was put across to rest my arm on once standing.

The nurse said to let her know if anything was digging in or if I was getting pain both because they wanted me to be as comfortable as possible and because pain would decrease the likelihood of the test working because it would cause my blood pressure to increase. She also said that I should let her know if I was experiencing any symptoms and that we wouldn't be able to chat once I was upright because me talking could affect the readings and it could also distract her and she needed to be watching the screen.

They then started monitoring with me lying down. There was some difficulty getting readings on one of the pieces of equipment (because I have poor circulation and cold hands) to start with, but once they were getting reliable readings on the monitor, they stood me up.

It's a peculiar sensation, because you're sort-of standing but you're supported by the bed and the straps. You're almost, but not completely, upright. I felt some symptoms to start with, my heart was pounding and I felt quite light-headed, nauseous and hot-and-cold-prickly, but then things eased off and waxed and waned.  The nurse checked with me that the straps and everything were ok. Once stood up I found it quite difficult to speak and could feel increasing pressure (presumably blood pooling) in my feet and legs. The nurse watched the screen intently throughout and made occasional notes and my consultant popped her head in a few times to check everything was going ok.

20 minutes arrived and the nurse said that she'd give me a spray of GTN under my tongue. She explained that it might feel uncomfortable in the base of my mouth, might make my heart race and there was a 1 in 20 chance of it causing a headache. She explained that it's only in the blood system for about 10 minutes, so it wouldn't have long-lasting effects. I agreed to go ahead and she said it didn't taste very nice and she was right. It's a very strong taste that sort of takes your breath away.. I can't really describe it, but it's not nice.

The nurse said not to be disheartened if we didn't get a positive result this time and that it's difficult to try to get the blood pressure to drop when it's not what it wants to do. But then she asked me a knowing 'are you starting to get an increase in symptoms now?'. I had been feeling pretty rough but wondered why she asked.... And then I knew. She had said previously that she'd probably see my blood pressure dropping before I felt myself going- she was right. Soon all I could manage was a few grunts in agreement that I wasn't feeling well, I'm fairly sure an alarm of some sort went off (though it could have been a tinnitus-type noise), and then I was out.

Passing out is a fairly indescribable feeling, but very familiar to me. The heat and cold washes over me, I feel ridiculously nauseous and acutely unwell and then I normally lose my sight and/or my ability to speak before losing consciousness.

The next thing I knew, I was coming round from a dream that I cannot recall, but remember was strange, to find about 4 people (including my consultant and the nurse) stood over me. I remember someone saying "Jessica, you're in the hospital", a feeling of confused panic, followed by some vague recollection of what was happening. I remember my consultant saying to wiggle my feet around to help me come round quicker, and someone else advising me to move my legs like I was on a bicycle; I remember just trying to work out where my legs were- I twitched around a bit (completely uncontrolled) and they seemed satisfied. I remember someone saying they would put a cold cloth on my head, and then being taken by surprise because I hadn't processed the words yet. I remember feeling totally disorientated and confused. I was offered a drink of water and caught the straw in my mouth but it took me a few seconds to work out how to suck and then a few more to work out how to swallow lying down. I was asked whether I had someone with me and their name, and just about managed to force out some one-syllable answers, but it was hard. I was still just trying to come round.

My mum was brought in to sit with me and I was still wide-eyed and fairly unresponsive, but was getting there. I had some more water which I managed better. I noticed for the first time that I was no longer strapped to the bed, the table for my arms was gone and my legs were raised on a big cushion- all changes made while I was totally out-of-it.

The nurse and my mum chatted briefly while I came round a bit more, and apparently I had looked like a rabbit in the headlights. I have a habit of fainting with my eyes open, it's apparently a bit freaky, but I don't have much choice in the matter.

The consultant came in and said that my blood pressure dropped dramatically which caused me to lose consciousness (and we were shown the traces). She said she was confident that I have Neurally Mediated Hypotension and resultant Vasovagal Syncope (fainting). She said that I'm getting blood pooling in my legs when I'm upright which is causing too little blood to get to my brain, heart and muscles which results in light-headedness and fainting, but is also probably a contributory factor to my fatigue, nausea and other symptoms.

I've been advised to squash the blood out of my muscles before standing up (eg. By crossing my legs), drink 2.5 litres of non-caffeinated fluid per day, increase salt intake, wear compression tights and do tilt training (stand 15cm away from a wall and lean against it until symptoms arise twice every day- the amount of time should increase with time).

None of this is going to exactly be easy, but if it helps to improve my symptoms then it will be totally worth it. There is no cure for Neurally Mediated Hypotension but there is symptomatic treatment. If the above methods don't work, I can be given medications, but they don't fix the underlying problem, they increase the blood pressure so that it drops from a greater level and therefore hopefully doesn't then drop low enough to cause symptoms.

After discussing with the consultant (which basically involved gentle grunts from me in what seemed like the right places- I was still pretty out-of-it), I was disconnected from all the monitoring equipment and started working towards sitting up, managed to get onto my scooter and left once I felt safe to sit up and scoot home.

I got something sugary to eat and a big drink in the hospital cafe and recovered quite well. I was extra-tired and needed to be flat a lot of the rest of the day but didn't feel too bad.

NMH is a form of dysautonomia, which means I've got a problem with my autonomic nervous system which controls everything that happens in the body automatically. The signals between my brain and my heart aren't working correctly.

It hasn't come as a huge surprise but you get so used to things coming back 'normal' with CFS, and you get so used to things being not only incurable but also untreatable, that I almost didn't dare believe someone would find an often-treatable problem that they think could be a significant contributory factor to my condition. I don't think I can come round to the idea that any new diagnosis is exactly 'good' but it sort of is this time because it's something major but potentially treatable, and treatable is most definitely good!!

PS I have had other appointments that I haven't updated about yet, but I will do. They went fine and there were no other new diagnoses, just advice. My main consultant did say he was happy for me to return to Uni for a few hours per week in September though which is exciting. Will explain more soon.

Thursday, 3 July 2014

03/07/14 update: health, Uni, medical leave

It's July. Already?! Eek. Where on earth did June, May, April, March and February go?! Wah! It would seem time in fact flies regardless of whether you are having fun..

I'm heading to my university city for a whole week soon to see a few doctors and sort out prescriptions and have my asthma review.. All exciting stuff. It'll be nice to see some friends who are still there though (some won't be around which is a shame). I'm not quite sure how I'm going to manage everything I've got planned, alongside serious challenges including getting washed and dressed, but I'll give it a go. What's the worst that can happen?! Ok, don't answer that actually..

How have things been since I last properly updated? Well, much the same really. I'm struggling to varying degrees with things I wish I still took for granted. I have been out and about a few times and have seen a friend though which has been nice.

My sleep schedule is still rather.. unique. I recently had to fill in a sleep diary for hospital which basically showed that my sleep is a mess (my analysis, not theirs). On average I got less than 6 and a half hours of sleep (range from 2hrs45 to 9hrs20) and it took an average of 200 mins (3hrs20) to fall asleep after lights out (range 2 hours to 5 hours 10 minutes). Yeah. Normally I sleep from about 2 until about 10, but it varies a lot.

Pain. Well, it hurts. I went to the cinema recently to see A Fault In Our Stars (good film, but tears are inevitable) and I remember them quoting 'pain demands to be felt'. So very true. 50mg Tramadol is now about as effective as swallowing a smartie and hoping it will help. My pregabalin (Lyrica) dose has now been increased to 600mg total per day.. The maximum dose. I'm not totally sure this is safe long-term as I'm only relatively light (and several doctors have pointed out to me that dosages should really be dependent on weight). It seems to be helping to some extent thankfully, but my pain levels are far from ideal. My ribs have been agony in particular- they never used to give me much grief, but the last few months my ribs have given me more grief than most other body parts.

On the subject of only being little, I'm significantly less little than I was- yay! I'm still about half a stone lighter than I was when I was well but I'm quite happy with how things are going. My weight is creeping up nicely. My ribs are still horribly bony yet my tummy is big and swollen (ok, partly IBS-related)- typical- you really should get to choose where the weight goes!

On a closely-related matter, my nausea is still ok. Not going to talk about this any further incase I jinx things ;)

Fatigue is still a nightmare. I still have to lie down a lot. Doing anything vaguely physical is pretty much a no-go. I can go out on my mobility scooter for a day (well, a few hours) and I'll be shattered but I can manage that ok (not every day, but some days). Bathing/showering and dressing and washing my hair (the absolute worst!) are much, much more of a challenge.

Walking is a real challenge. My balance seems even worse than it was..

My mood is variable, but it's been ok. The pain levels have been difficult to endure at times and that wears me down. I've also been stressing a bit at the idea of starting back at Uni, because things are far from how I'd hoped they'd be at this point, but it's exciting to think I'll hopefully be back with my friends and doing what I want to do. The lack of progress is frustrating. Going weeks at a time without seeing anyone your own age is strange. Relying on others and losing any sense of purpose is soul-destroying. But mostly I muddle along ok, and stay relatively happy. I enjoy the little things, and they keep me going.

My brain feels very mushy and I get mentally fatigued as well as physically which is frustrating. I can't always manage (and when I can, I often forget) to reply to long messages (sorry everyone currently waiting for replies) and I can't always manage to update my blog which is why posts are sometimes rather infrequent. This is a bit of a concern considering I'm hoping to return to university in September. I also get stuck on sounds sometimes (sss, lll, rrr, www) and can't remember specific words when I'm talking which is really annoying.

It's become clear to me that Interruption of studies/Medical leave(/being stuck at home chronically ill for any reason) is far from the 'easy option'. The challenges while struggling at Uni are different to those while on medical leave, but neither circumstance is an easier experience than the other. I dream of being back at Uni, but I dream of being back AND well- I don't miss the constant administrative nightmare of juggling everything medical with studying, I don't miss trying to do pieces of work or revision through flares, I don't miss never knowing how I was going to drag myself through the next day, I don't miss trying to get my screaming body through to the end of the week and spending the weekends recovering enough to face the same onslaught the next week. When I was struggling at Uni time off certainly appealed, but I definitely didn't hope for this reality- time out from Uni, with little you are able to do, too ill to go out regularly, and few friends around to visit, is isolating, depressing, mind-numbing and incredibly frustrating; nobody would 'wish they got to lie around all day like me' if they took into consideration the amount of pain I'm in, the lack of choice I have in the matter, the fact most daily tasks are a huge challenge or impossible for me most days or how horribly ill I constantly feel. When I was at Uni I wanted a holiday- but from Uni AND my illness, primarily the latter. Basically, I just want rid of this illness, then even the holiday wouldn't be necessary, although it would still be nice!

I had no choice in swapping from struggling at Uni to going on medical leave because I was too ill to stay studying, but I have a choice (to some extent) about swapping back and I still want to try and study again, despite the challenges. I'm going in with my eyes wide open- I know it's going to be hard- but it'll be worth it. I can't do the job I want without getting through my course first, so although it would be great to enjoy every second of my course, right now just getting through it is the aim. I love my course, and I just hope it doesn't feel like an ordeal this time round. I'm not a lot better than I was when I left, but I want to give it a try. I'm paying rent anyway, so I may as well try and live there! I won't do anything stupid though, there's lots that needs to be taken into consideration. If I don't feel able to meet the demands of my course, or my condition relapses, I will have to retreat.

This is all presuming I get the go-ahead from my consultant to resume my studies.. I think it's going to be a close call to be honest. I could obviously influence the decision hugely if I wanted to, but I want him to be able to make an accurate assessment of the situation and advise me accordingly. Balancing my health and my ambition isn't easy, so in a way I'd like someone else to be making the decision.

Going back would risk aggravating things, and could possibly trigger a further decline in my condition. I'm not sure I feel able to cope with an even greater level of illness and disability. Obviously that would be worst case scenario but it's perfectly possible..

Living with a chronic illness seems to involve constantly walking fine lines. It's often hard to know what to do and actions always have consequences. You can't always prioritise health, because you could end up mollycoddling your failing health and getting nowhere in life. Sometimes pushing boundaries to some extent is a positive thing. Pushing them too far, however, risks disaster. You do have to know when to step away but at some point you have to try dipping your toe back in the water again, but knowing when it's safe to do so isn't always easy.

Friday, 13 June 2014

Visibly disabled- one year on

I haven't really spoken about the more 'visible' side of my disability since shortly after I got Poppy, my mobility scooter, and as that was now a year ago, I thought I'd share some thoughts and observations.

It has been strange to identify myself as disabled and no longer shy away from it. I've lost a lot of mobility and my condition has a huge effect on my life. It is hugely debilitating and walking is a challenge, so yes, I am disabled. It's just my reality. Hearing other people describe me as disabled took a bit of getting used to, but it's just a truth.

Going down the street people often walk in a huge arc around me as though I'm either contagious or have no control over where I'm going. I'm actually quite adept at driving my scooter, I don't regularly run people over, so there is no need to give me quite so much leeway. Give me personal space, yes, but I won't lash out at you, you won't catch my disability and I'm unlikely to run your toes over, so giving me quite such a wide berth is unnecessary.

People stare. A lot. You get used to it to the extent where most of the time you barely notice it, but it's strange for people who aren't used to being with me, or haven't been with me for a while. I'm afraid the stares now come as a compulsory additional extra. Maybe I should give a pre-trip reassurance to friends that they aren't wearing something hideous and they don't have anything smeared across their faces.

Children find me, well.. Poppy, fascinating. They stare and ask questions and it embarrasses their parents. It's quite amusing to watch the familiar scene unfold. The parent normally looks horrified, looks at me to judge my reaction and then hurries off out of my earshot before replying. My favourite of these encounters went like this: Child "Why's she on one of those?", Parent "because it's fun" *smiles and winks at me*- it's nice when people can still show a sense of humour rather than freaking out about it being a sensitive topic! I'd hope that parents sometimes take the opportunity to explain a bit about disability/differences (and that they're normal and nothing to be put off by) to their kids though. I really don't mind children staring, they don't know better. I admit it hurts slightly when they stare at you as though you're from another planet the whole way down the street, head turned in the exact opposite direction to the direction of travel, but I know I look different sat on my scooter, although I would argue they look pretty strange walking looking the opposite direction too, so y'know...

The people that totally avoid eye contact are quite common. They're so conscious of not wanting to stare that the normal level of natural eye contact is lost. I understand. I've probably purposely looked the other way to not seem to be staring, but it's a strange experience when people glance at you and then abnormally quickly look away and don't look back even vaguely in your direction. I definitely prefer the can't-bare-to-look-people to the hard-core-stare-people who literally don't even look away when you look them straight in the eye and raise your eyebrows though. I had one of these when waiting for a train once- she spent at least 15 minutes staring intently at my scooter- it was seriously awkward; I tried the staring back, raising eyebrows, the polite cough to draw attention to the fact I was alive and had a face, but all to no avail- her eyes did not raise from my body and the scooter on which I was sat.

It's frustrating when people stop dead in front of me with no recognition of the fact that I can't stop dead on wheels like people on legs can. Poppy's brakes aren't great and even if I put my feet down, I can't stop instantaneously. It's a nightmare. If people don't realise I'm there, or someone stops suddenly in front of them, it's just one of those things, that's fine, it's when they're well aware I'm there and then they stop dead without warning that it bothers me. Oh and then you get the people who are so stunned by your presence that they stand directly in front of you, staring at you, which means you have to manoeuvre round them, or smile and say 'sorry, can I just squeeze past?'- their response is normally to shake their own head back to life (you know- when people shake their head erratically with their eyes closed and then open them wide- I assume it's like jump starting your car, who knows..?!) and then apologise emphatically. It's often a panicked 'I don't know where to go to get out the way- so I'll just freeze' situation, in which case the intentions are good at least!

People who talk to you as though you're stupid are probably the most frustrating. My legs might be rubbish, and yes at times my speech isn't 100% perfect and I have abstract challenges with thinking, but I'm far from stupid. Speak to me the same as you would any other intelligent human being, I didn't use my brain in part exchange to get my scooter. I have a medical condition affecting my mobility, not a learning disability. I had an eye test at the same time as my mum one time, and a lady came across and asked mum whether she needed to be in with me. I hadn't been using my scooter long so her ignorance came as a bit of a shock!

One piece of advice: speak to me about my access requirements, not whoever is with me. They might not even know what I feel capable of that day and I'm more than capable of speaking for myself! I don't like being referred to in the third person when I'm there: hearing 'Can she..' or 'Does she..' is maddening and frustrating. Assume the disabled person is capable of understanding and answering until proven otherwise, not the other way round.

People rush to be over-helpful, are over-polite and leap out my way. Don't get me wrong- I appreciate it when people open doors for me because they are there at the same time as me. I just find it a little odd when someone runs across a room and leaps to my rescue by opening a door for me as though I would never have been able to get in otherwise. I can open (most) doors. Maybe not as slickly as people on legs, but when I was at Uni I regularly got through multiple doorways unaided every day. Gasp! Wow. Well done me! This group of people are by far the most innocuous and least annoying- it's just that being helped by random strangers feels a bit odd. The most peculiar random offer from a stranger was at the train station once- I was sat on my scooter and a (drunk) man asked whether I wanted a 'lift' onto the train- how he was planning on carrying me + scooter up the steps, I don't know (particularly given his inebriated state), and how he had missed the fact I had station staff with ramps stood with me, I really don't know.. It gave me (and his equally drunk friends) a laugh though!

I end up saying sorry a lot. I apologise every time I have to ask someone to move because I'm too wide to fit past them. I apologise every time I end up in someone's way because my scooter is blocking the aisle. I say sorry every time I need to do something differently. I apologise every time my disability inconveniences others. Yet it's not my fault that I'm disabled. It's not my fault that I need my scooter and the floorspace it requires is greater than the average human. If I just rode over people's feet when they're in the way it would save me a lot of time and 'sorry's, but I'm not sure people would like it...

You realise a lot of places are still very inaccessible when you're on wheels! Some places I can't get into. Other places I can only get into because I can still walk a little and my scooter can be lifted. You realise how inaccessible a lot of places must be to full-time wheelchair users; I'm lucky in that I can get up and walk a few steps, they'd have to be carried. Also, lifts break far more than I previously realised.

Cobblestones.. Nightmare. Enough said.

People give me sympathetic, pitying looks. They have no idea what my reality is. I know people mean well, but it's totally out of context- they don't know my name or my condition, they've never spoken to me. It's just a bit weird.

I spend a lot of time online and I find some of the disability-related things I see strange. There's an image that goes around that says 'the only disability in life is a bad attitude'.. Hmm, tell that to a full-time wheelchair user facing a flight of stairs- no amount of positive thinking will get them up them. Tell that to someone bed-bound due to a severe chronic illness in intractable pain- are all the same opportunities and experiences available to them. Some aspects of disabilities can be overcome, but disabilities are disabling- that's the whole point- a positive good attitude won't change that. A lady called Stella mentions this in this fantastic talk: http://on.ted.com/b0F6N.
Another is an image that says 'back in my day wheelchairs were for disabled people, not fat people'. Many disabled people are overweight due to medications or mobility impairment- how do you know that person isn't disabled? I feel fortunate that I'm underweight because I face far less judgement as a result, but that's wrong.
The last one I want to mention is an image of someone standing up from a wheelchair and it's branded a 'miracle', as though the wheelchair wasn't necessary. A lot of disabled people can stand and walk a little, myself included, if doesn't mean we're not severely disabled and in need of the mobility equipment!

The strangest thing is how much things changed with a small progression in my illness. When I was desperately struggling trying to get around on my failing legs, in agony and severely lacking in energy, nobody could see that I was ill.. Strangers wouldn't have dreamt of offering help, I would never be offered a seat on public transport (in fact I used to get 'the look' suggesting I should leap up to offer my seat to very able-looking people just because I was the youngest person around), people would sigh at me and push past me because I was walking slowly, people would bump into me oblivious of the fact it caused me pain- the world seemed like a harsh place. I could have done with some sympathetic smiles and a few offers of help back then, but my plight was invisible.

Before I was visibly ill, I was primarily seen as a young person. It seemed to be a label that turned people away. People don't talk to young people. Now that I'm primarily seen as a disabled person, people seem much more keen to chat to me in situations where I would have previously been ignored.

I like it when strangers get chatting to me and my disability isn't even mentioned. I like it when people compliment my scooter- I think she's pretty cool too. I love it when people offer to help, wait for a reply, and act on said reply. I like it when people talk to me and treat me like an ordinary human being. My mobility impairment is there for you to see, but just because you know my legs aren't 100% doesn't mean you know about me- talk to me, get to know me, don't judge me by my disability.

Thursday, 12 June 2014

Pain flare

My pain is flaring recently. I am in pain head-to-toe. Literally. Normally I'd leave it at that, but I decided that I'd distract myself from the pain I'm currently experiencing by describing each sensation. And then I decided I'd post it as it may be of interest to some.

My scalp is ridiculously sensitive to the extent that brushing my hair causes pain.

My facial pain has been horrible recently. It's been affecting the left hand side of my jaw and making one of my teeth hurt like hell. I've been getting sharp stabbing pains in my forehead more frequently that make me gasp in pain. I get aching across my cheeks and in my forehead as though I have sinusitis, even though my sinuses are clear.

I've got really bad rib pain. My ribs are tender and at times I get crushing pains in the centre of my chest and also stabbing pains either side, as though someone is twisting a knife wedged between my ribs.

My back keeps going into spasm causing me to freeze in absolute agony. The pain absolutely takes my breath away.

My abdominal pain is a constant battle. The pain is just so severe. I don't know what to pass off as 'normal' (for someone with IBS and CFS) or whether any of the pain is panic-worthy. I end up doubled-up in pain at times.

My shoulders keep feeling out of place and painful.

My arms feel heavy and exhausted, weak and painful. Holding my arms up against gravity causes deep, ever-increasing discomfort.

My left wrist is agony if I try to push myself up using my left hand at the moment, which is a bit of a nightmare because that leaves one wrist taking all the strain until it improves..

My hands really hurt. The muscles, the joints, the nerves.. Everything. Even typing on my phone at times is too painful for me to bare.

My hips and knees are causing me a lot of pain. It's hard to find a comfortable position to sit or lie in.

My thighs ache endlessly, as though I've run a marathon.

My feet, ankles and lower legs hurt from using the wrong muscles due to disordered walking.

It's been difficult to tolerate.

It's so challenging because I've been having to take a lot more painkillers over the last week or so, but that makes me feel worse, both because of side effects and just feeling dependent on them and unable to cope alone.

Plus, they're not working. They don't get the pain down to a bearable level. My pain is totally out of control. I need to go back to the doctors, but I'm reticent to increase doses by much or try anything stronger. I don't think I have much choice though in all honesty. I can't live with my pain as it is long-term.

Dealing with pain is both physically and emotionally draining. It's hard to tolerate and cope with. But I just have to get through hour-by-hour and day-by-day until the pain eases. Although I'm suffering tonight, yesterday was a better day, so I'm hoping I'm over the worst of this flare!

Friday, 6 June 2014

Protect Disabled Students Allowances

Friday 6th June 2014, in addition to being the 70th anniversary of D-Day, is DSA Day! DSA stands for disabled students allowances- funding for equipment and services that are absolutely vital to enable disabled students to reach their potential.

A recent announcement was made proposing huge cuts to DSAs; cuts that threaten to make studying at university far less accessible for some chronically ill/disabled students.

The support I have received through DSAs has been phenomenal. In particular, I have relied heavily on non-medical helpers. Personally I have had the help of note-takers, study support mentors and practical facilitators. My support workers meant that I was disadvantaged as little as possible by my chronic illness. As I became increasingly disabled, the amount of funding available for my support increased up to the maximum NMH allowance- I was incredibly grateful to have that support net there.

Knowing I had DSAs in place when I started Uni gave me the confidence to continue with my education despite my illness. Knowing my Disability Adviser could apply for additional funding for extra support when my condition deteriorated meant I felt able to continue studying even when my health started to decline significantly. Having the constant support of various support workers and the reassurance of my mentor meant that I felt able to cope with the demands of my course, even when I could barely walk and was increasingly unwell.

DSAs were my lifeline. I did, eventually, have to take some time out from Uni because my health deteriorated too far and I needed time to recuperate, but DSAs meant this could be delayed as long as possible and gave me time to come to terms with my illness. Without DSAs I would have no hope of returning to university in September.

In addition to my support workers, I was also supplied with a lot of very helpful equipment. A laptop with useful software has allowed me to work from home, and software enables anything on screen to be read out which really helps on fatigue-heavy days, or light-sensitive days where the screen has to be so dark that it's practically illegible. My ergonomic fully-adjustable chair, laptop stand, ergonomic keyboard and mouse mean that working for extended periods causes as little pain as possible. My laptop is lightweight and I have a lap-tray-desk-thing so that I can work from my bed as needed. My printer allows me to print things out when it is easier to read printed things rather than trying to read on screen, and means I don't have to try to get to a Uni computer when I need to print assignments etc. I have a voice recorder (and permission to use it) which means I can review lectures I struggled to understand when I feel up to it (or as revision if I'm not able to read), and can listen to missed lectures (due to illness/appointments) recorded by friends on my behalf. I doubt a lot of this would be funded under the new rules, yet it's been absolutely essential for me, and really has made the difference between me succeeding and failing.

The government say the support will still be available, it will just be the university's responsibility to fund it. This means that availability of support workers and equipment will vary between universities. Universities will have reason not to actively encourage disabled students to apply because funding their support could be very costly. Students may end up having to take the availability of support into account when choosing between universities, putting them at a disadvantage compared to healthy students.

It just doesn't make sense when the current system works. It's expensive and the government is short of money- I get it- but everyone agrees this support needs to be funded, and it makes more sense for it to be funded centrally than at a university level so that it's fair! The argument that they want students to be more independent is totally redundant- students are reliant on this support, and they need qualified people to reliably provide it. They shouldn't have to rely on the goodwill of others for them to get the education they deserve.

Cutting costs on disability support at university also just doesn't make sense financially long-term. It's possible that fewer young people with disabilities would apply for places at university due to a lack of confidence that they would receive the necessary support- this would be a huge step backwards as a society. The changes would be likely to lead to a much greater drop-out from university due to students having difficulty managing their disability/chronic illness in combination with their studies. This is likely to lead to greater dependence on benefits and a greater likelihood of future unemployment both due to a loss of confidence in their ability and support systems, and less qualifications. Disabled people have a hard enough time avoiding workplace discrimination already, without failed attempts at obtaining a university degree counting against them. Students need reliable support to allow them to progress successfully.

Please, please, please sign this petition to prevent cuts to Disabled Students Allowances: http://epetitions.direct.gov.uk/petitions/63748 and/or contact your MP. I, along with many, many other students with disabilities/chronic illness/specific learning difficulties, am totally reliant on this funding to support me through my degree, as it pays for all my support workers and necessary equipment. As it stands, these cuts shouldn't affect me directly, but I'd hate to think this support wouldn't be available for future students! 



Edited to add: I just sent an email to my MP calling on them to support the National Union of Students' campaign to save Disabled Students' Allowances and to sign Early Day Motion 48 - Changes to Disabled Students' Allowances.

It only took a minute or two using a model letter - please take the time to do the same.

All you have to do is visit http://www.thestudentassembly.org.uk/lobbying-tools.html and put in your postcode - easy as that.

Friday, 16 May 2014

Appointments update (GI and dizziness)

Firstly, I'd like to take this opportunity to thank everyone who was supportive of my awareness attempts during ME Awareness Week, I'd also like to thank everyone else who did things to raise awareness and/or funds, and those who supported them- I couldn't be more grateful to you all! I hope you all enjoyed yourselves and aren't suffering too much for it! I was hoping to get another post or two out during awareness week, but it wasn't to be I'm afraid. Other people have done a fantastic job though so please do have a look around online and dig them out! The 3 lovely ladies featured in my 'favourite blogs' box on the right all wrote fantastic pieces for awareness so please do take a look.

I've had 2 appointments recently, so thought I'd share how they both went now things are a bit quieter.

GI appointment

This was GI appointment number 2, but with a new surgeon, this time discussing the whole gastro-intenstinal system rather than just stomach-up!

A while after checking in, I got called over for all the usual pre-clinic checks including blood pressure, heart rate and oxygen saturation- all fine. I was then weighed and measured- my BMI has improved- it's up 1.2 compared to at my lowest which is great. I then went back to the waiting room before being called through again, but this time it was to see the doctor. I was left in a room on my own waiting for the consultant- both GI clinics I've been to have done this and I find it very strange, particularly given the amount of medical equipment in there!

The consultant eventually came in. He was friendly and pleasant. He asked about my course and my circumstances, so I explained I was on medical leave etc. 

He asked about my weight, and I explained that it was increasing rather than decreasing and was much better than it had been. He seemed satisfied that it was therefore not a huge cause for concern.

We had a long chat about all my abdominal symptoms. I explained what had led to me being referred to him, and the investigations I've had done already. Basically, I had been advised by my upper GI surgeon to be referred again to have a colonoscopy if the results of the investigations he was ordering came back clear, and they did.

The (new) GI surgeon asked me what I thought would be found on a colonoscopy. I replied 'nothing'. We both agreed that my symptoms point markedly towards IBS. Also, were it an IBD, inflammatory markers in my blood would be raised and I know they aren't. He felt an IBD was unlikely and I don't fall into the age bracket where bowel cancer is a major concern.

He said a colonoscopy would be very unpleasant for me to go through because of my IBS, the prep is not easy, and it's not 100% safe. It is a safe and bearable procedure, don't get me wrong, but like all things there are risks. He said he'd hate to refer me and it cause complications, as I have enough to deal with as it is and he is confident it would come back clear so it wouldn't achieve anything. He asked me whether I was particularly keen to have it done, and I was perfectly happy not to go ahead given our discussions (and let's face it, who wants to go through a test like that!).

I was interested when he commented that Irritable Bowel Syndrome is not considered a diagnosis of exclusion- you don't diagnose it when other conditions aren't found; it's considered a clinical diagnosis that can be made based on symptom history alone. I realised IBS was often diagnosed and treated by GPs without invasive investigations being necessary, but I had never thought of it like this.

I then brought up the topic of gastroparesis (partial paralysis of the stomach) and whether that was an avenue worth exploring. He said it would certainly explain some of my symptoms, particularly my nausea, and it was perfectly possible that I might have delayed gastric emptying. He then went on to say, however, that there was only very basic equipment nearby, which would only enable a very basic gastric emptying study to be done and it would be best done further afield, maybe near Uni-home instead. He did say that it's questionable whether knowing I definitely had delayed gastric emptying would have an impact on my treatment anyway though, because there's little that can be done about it. So, I think that's something to think about, because there's no point having tests done for the sake of it, and I have tried drugs to increase gastric motility (and therefore speed up stomach emptying) in the past with no real success (although I think I had to stop them due to side effects), but an explanation could help with understanding and coming to terms with my symptoms... We'll see.

At one point he asked about CFS; whether it was different to ME, what I understood/had been told about my illness, and whether my GI problems were common with the condition. They're the sort of questions that are incredibly difficult to answer eloquently and fully when put on the spot with limited time, and few definitive answers available, but I hope I helped him understand a little, or at least sparked a bit of an interest and he may have gone away and looked into it a bit more. He seemed to be showing a genuine interest, which was nice!

I have obviously only outlined a lot of what we discussed, but there are details I'd rather keep private, for obvious reasons.

He said at the end that it had been interesting to meet me and he had learnt a lot. I think we both felt that although the appointment hadn't really achieved a lot in terms of arranging any further investigations or anything, it had been helpful in terms of discussing what the problem was, what it was unlikely to be and whether further investigations were therefore necessary. It was like an interesting, engaging chat about something I knew quite a bit about, but was keen to learn more, with a few slightly awkward moments discussing topics nobody likes to discuss!

It would seem that I now officially have IBS. It's not come as a huge surprise because I've had 'suspected IBS' for years and have been on medication for it for probably over a year now, but that's chronic illness diagnosis number 4 on the list I think. Asthma, Atypical facial pain, Chronic Fatigue Syndrome and now Irritable Bowel Syndrome.. Fun! AFP and IBS are both because of my CFS, and even my asthma has been worsened by it! Chronic illnesses certainly seem to breed.

Dizziness/faints appointment 

I got lost on the way the clinic (because it's a hospital where I always get lost, it's tradition), but had factored in time so still arrived early!

I was given questionnaires to fill in about different symptoms and limitations- some obviously relevant to dizziness, others slightly more abstract. I managed to work my way through the questions before my appointment time, although it was quite a task!

I then got called in by a nurse and had an ECG, and then I was fixed up to a different machine (with different electrodes typically!), a blood pressure monitor and something round my fingers. They took all the measurements lying down (the finger-thing makes it feel like your finger is throbbing) and then I was stood up for a couple of minutes while they took the measurements again (standing=ouch!). Being wired up to quite so much equipment and having to have so many electrodes stuck all over my chest felt a bit strange, but the nurses were lovely, and I was made to feel at ease throughout.

I was then taken round to the consultant. She was friendly and asked me questions about who I'd been referred by and why. She asked me about my CFS diagnosis, my dizziness and fainting, meds etc.

She explained that some CFS sufferers have problems with their autonomic nervous systems- normally POTS or Neurally Mediated Hypotension. She said that because my blood pressure is fairly low, she suspects I may have NMH. She said it's important to know because if I have NMH, there are medications that can treat it. The basic testing, however, had not given enough evidence to make a diagnosis. She said that she felt further testing was needed, so I'm going to have a Tilt Table Test. She said it would involve me standing for up to 40 minutes, but I would be supported, and they would put extra straps round my legs to take the physical stress off my legs. She asked whether the idea filled me with horror and I said it wouldn't be pleasant but I was happy to go ahead. She is therefore referring me across to the hospital where she will do the test.

I was advised to increase my fluid intake in the hope that that might help, as increasing fluids and salt can help to increase blood pressure and is often a management strategy with dysautonomias.

I'm hopeful the tilt test will show a treatable abnormality- it gives me hope that something can be done to improve things. It's weird when you're chronically ill like this, because you're already sick so you're just looking for ways in which things can be helped/treated, and diagnosis of specific problems is sometimes a way to get treatment, so it almost seems like a positive thing.

(Pictures from Chronic Illness Cat page on Facebook)