Tuesday, 29 September 2015

Invisible illness awareness week- mental health

It's invisible illness awareness week and I'd normally prepare a post about my ME/CFS or NMH or chronic pain/illnesses etc, but I've discussed all that before, plus I don't really feel that these conditions are particularly invisible for me anymore- for example: I use a mobility scooter, I'm a bit wobbly, I live in an adapted room, I wear (really sexy) compression tights and am often grimacing in pain. There's one recent aspect of my health challenges that is normally completely invisible though..

This really, really, really isn't easy for me to admit, but in the interests of honesty, openness, and not bowing to stigma, I want to mention my recent battle with symptoms of depression and anxiety. About 3 months ago my mental health absolutely nosedived- scarily quickly.. Mental health difficulties are such a huge problem in our communities nowadays, and yet too often they are not talked about openly. In fact I haven't really been open with many friends about this at all- until now.. Before you read on, can I just reassure you that I'm describing how things were at my worst- I've come a long way since then. But I am sharing to raise awareness, help others going through similar feel less alone, and to make the invisible visible.

For those of you who have never experienced either depression or anxiety, please let me try to give you some insight into what it's like to be depressed and anxious, or at least what it was like for me: Every minute of every day is a huge, overwhelming battle. Even when you are not thinking about anything in particular, there's a pervading sadness- it's not really like a feeling, it's a state of being. I felt continuously uptight to the extent that I felt like I couldn't breathe; the anxiety was suffocating. There was one evening when I must've breathed into a paper bag on over 20 occasions in an attempt to try to get my breathing under control- I was in a constant state of complete panic. I was much, much more irritable, and it felt like everyone was saying the most infuriating things possible. I often saw(/see) things out of proportion- relatively small problems/challenges seem completely insurmountable. I wasn't always nice to be around, partly because I felt like people had no idea and weren't grasping what I was going through. I was quite uncommunicative at times though, so understanding what I was going through was a challenge. I was tearful and ended up crying a lot, including in public on multiple occasions. I sobbed my eyes out to one doctor, and welled up in front of multiple others. I was stressed and felt unable to cope with anything and everything. I really seriously wanted to quit uni, despite having worked for years and years to get where I am, to try to reduce the stress and anxiety I was feeling. The only thing that sometimes helped was being around people as this distracted me, but the idea of being around people was truly terrifying, and getting myself up and dressed to leave my flat was horrifically difficult. Some days it felt like I was experiencing 1,000,001 emotions all at once, other days I felt completely numb and distant from everyone and everything. Some of the time I cared too much about absolutely everything, the rest of the time I simply couldn't care less about anything. The effort involved in putting on a brave face was utterly exhausting and not sustainable. I just wanted to curl up in bed and not move; just the idea of needing to get out of bed brought me to tears on multiple mornings (this was particularly frightening having had to fight my physical health difficulties to prevent becoming bed-bound). Motivation was (is..) lacking to a really serious extent. And when I did find the motivation to do things, my anxiety would sometimes prevent me being able to, and I would have to abandon trying to do it to relieve the anxiety because I'd get tearful and the anxiety was paralysingly overwhelming. Even doing important things for my physical health was, and sometimes still is, completely beyond me.

Some of this probably doesn't sound particularly 'invisible', but most of this happened in the privacy of my own home, and few people were actually aware of what I was battling. It was only when I admitted to a select few people, to varying extents, how I was feeling that anyone got some sort of an insight. A vast majority of the time the pain and turmoil was hidden by a smile, or at least a blank face if that's all I could manage, and nobody would've ever guessed how broken I really was.

The impact of mental health on physical health is huge, particularly when you have conditions that you need to actively manage. Managing health problems when you are struggling with low mood and lack of motivation is practically impossible. Mental health challenges also cause, or worsen, some physical symptoms.

The impact of physical health on mental health can also be absolutely massive. Most of my emotions were centered around things to do with my physical health problems (although there were other very significant things going on in life separate- to varying extents- from this too). I still struggle to accept my disabling chronic illnesses, and that has an affect on my mental health. Living with constant pain and so many other symptoms and limitations is indescribably difficult. It's also hard when your illnesses cause you to fall behind your peers, and you feel increasingly 'different'.

Although I have distinguished here, I really don't like the separation between physical illnesses and mental illnesses. They're all just illnesses, and they're all incredibly challenging to deal with. Illnesses are often deemed 'unquestionably physical' when a level of something is found to be wrong, but if my 'mental' health problems can be treated with something that alters chemicals- is that not physical too? It's just a strange distinction in my opinion. Mental illness does not get the respect it deserves, and you'd think there'd be greater understanding given the numbers of people affected. There's stigma associated with mental illness, and you feel as though you should hide it. You feel like you can't open up and tell people that your head is a real mess at the moment. You feel like people expect you to be able to make yourself better because it's mental rather than physical, but it's really really not that easy. You can't just snap out of it and choose not to be depressed/anxious. You would if you could, because it's an awful place to be.

It's strange because there's sometimes discussion about how difficult it is to distinguish between ME/CFS and depression, and I can understand how that could be the case as a doctor who is an onlooker, but the experience is entirely different- or certainly has been for me. With my ME/CFS I've been desperate to do things and fighting to get upright and back involved in things, but was unable to due to symptoms, whereas when I was depressed I just wanted to be left to curl up in a ball under my duvet and didn't want any contact with the world. Having been practically bed-bound with ME/CFS and NMH, it was weird to end up feeling like I didn't WANT to get out of bed, when I've fought so so hard to rejoin the outside world.

It's also an important reminder that illnesses don't occur in isolation- you can have both physical and mental health problems, and like in my case, you can have 1 for many years before developing the other, so it's important to remain vigilant.

If anybody out there is struggling with their mental health, I would really really strongly advise you to speak to a doctor or other professional. Even if you feel like no one will be able to help and your situation is hopeless- give it a chance. I'm so glad I was open and honest with the right people and I'm feeling SO much better thanks to the help I have received. I'm still a bit anxious, down and lacking motivation to some extent, and there are things I can't bear to properly think about or tackle, but I'm certainly nowhere near the dark place I was in. Therapy/Counselling can seem daunting, but give it a chance and they'll soon put you at your ease- it's what they do all the time; if you don't get on with the first one you go to- don't give up, try another. And don't be afraid to give medication a go- it might be just what you need to get you through. Obviously meds aren't for everyone, but they are necessary and helpful for some- if you decide against them, that's fine, but make sure it's for logical reasons. I was a little reluctant, although I'd reached the point of desperation for help, but I'm so glad I started on my medication- I don't think there's any way I could've coped without it (Note: if you have ME/CFS, remember many of us are sensitive to meds- I started on a very low dose and slowly increased until things were bearable- oral drops meant I could increase 2.5 or 5mg at a time which was great, and I'm now tolerating 4x my initial dose absolutely fine). I didn't fully realise how abnormal I felt until things started to get back to normal.

I don't want to be on antidepressants forever, and I don't think I'll need to be, but for now they're doing a fantastic job, and are managing symptoms that had got unmanageable- just the same as all the other meds I'm on.

It's weird how it feels different when the medication is an antidepressant. I was scared I'd feel falsely happy or out of control, but it's not been like that at all- it's just taken the edge off the horribly extreme emotions I was experiencing and made me feel more like my usual self. Because it's an antidepressant, I'm not quite so comfortable with mentioning that I'm on it. I worry what people would think and I feel uneasy about the fact I'm medicating my moods/emotions. But I know it became necessary, and I also know I shouldn't feel like this, as it's only the same as needing a medication for any other condition/symptom. As my physiotherapist said- sometimes brain chemistry goes wrong too.

I must say, I've been incredibly impressed by the way my medical team, the uni counselling team and a couple of other members of staff I told have dealt with my recent mental health challenges. The people I told have encouraged me when I mentioned I was having counselling. I know it's difficult for people to understand what it's like unless they've been through it themselves, but people have tried and have been non-judgemental, which is all I ask. My doctors have been amazing; my GP was simply surprised I've held things together as long as I have. All my medical team have acted really calmly and have been incredibly supportive. I think it's important to remember that as a patient it may be the first time you've been through anything like this, but they're dealing with patients experiencing these difficulties all the time.

Lots of people live hiding these sort of difficulties, and because they're invisible, you don't know who is and isn't struggling with these problems. If this is you though, please don't hide them from the people who could help you, you deserve to feel better, and there are people who can help that happen. There were times when I thought I'd never get through these problems and come out the other side, but, with the help of support, counselling and medication, I largely have, and am feeling about 85% back to my normal self. Because of the invisibility of mental health problems, there is a real risk of people not getting the help they need, so please be vigilant and keep an eye out for those around you showing signs of struggling.

It's scary how fast your world can seem to fall apart around you, but reach out and tell people and they can help you piece it back together.

PS this post actually encouraged me to speak out and I think has some important reminders: http://www.buzzfeed.com/timetochangecampaign/10-things-we-can-all-do-to-challenge-mental-health-1gemw Remember 1 in 4 of us experiences mental health difficulties every year, and the risks are even higher among those with chronic health problems, so if you're struggling, you're certainly not alone, despite how it might feel. If you ever need someone to talk to who understands, do feel free to give me a shout.

Sunday, 1 March 2015

55 things learnt from 5.5 years ill

5 years ago today, having been ill for 6 months, I was diagnosed with ME/CFS, which slowly went on to totally wreck my life, with some help from a few other conditions along the way. But I'm now rebuilding my life and am managing fairly well. My quality of life is relatively good, and I'm happy. Obviously I live knowing that a severe relapse is possible at any time, and I'm struggling a bit still with prolonged sitting up, so much in the way of walking and standing will have to wait, but things are definitely good in comparison to where they were.

What I've been through is pretty much documented on here. I've already mentioned the severe pain, the immobility, the loss of independence, the nausea that nearly resulted in tube feeding, the struggle to walk, the struggle to sit up, etc etc.

But that's not what this post is about. The struggle was, and is, horrible, but I've learnt a lot during the half-a-decade I've been diagnosed (and I know how ridiculously cheesy that sounds- I'll start calling it my 'journey' in a minute). Here's 55 things learnt from 5.5 years ill:

  1. The worth of a person should not be based on what they can or can't do, but who they are as a person.
  2. Every individual is important and their life, and quality of life, matters.
  3. The small things in life are worth taking note of- we're surrounded by amazing things every day; even when very sick and debilitated there are things to admire and be thankful for.
  4. The people around you are your greatest asset. Friends and family can be truly amazing.
  5. It's sometimes surprising who stands by you and who drifts off into the distance when things go wrong- the ones who stay by your side are true friends to be treasured.
  6. You can get through more than you would ever think possible. When you're given no choice, you can survive.
  7. Chocolate doesn't solve all your problems, but it does normally help.
  8. Music can be incredibly soothing.
  9. Bad times pass. Some times it just takes longer than others.
  10. Good times pass too, but it's important not to dwell on that- enjoy it while it lasts.
  11. Live life while you have the chance.
  12. Health is fragile, and precious.
  13. The true value of health can only be appreciated once it has been lost.
  14. There are still a lot of barriers to living life with a disability- both physical (e.g. stairs) and societal.
  15. Some people think you must be thick if you're on wheels.
  16. Lack of independence is difficult to tolerate.
  17. Some people take on new caring responsibilities incredibly graciously, others may be more begrudging at times.
  18. It is hard not to feel enormously guilty when reliant on others.
  19. It is possible to be happy and have fun even when feeling sick and in pain.
  20. Sometimes illness and pain gets you down, and you just have to wait for the dark cloud to pass.
  21. Being sick is tough; looking after someone sick is tough.
  22. Knowing when to accept help can be difficult.
  23. Taking a step back and establishing a slower pace of life is hard.
  24. Behaviour change can be incredibly difficult.
  25. Resting rather than fighting on is challenging.
  26. Any anniversaries or significant dates can be reminders of the passing of time and can stir up emotions.
  27. Accepting an illness is a constant battle.
  28. Pets can be the biggest comfort at times.
  29. Pets' love is totally unconditional- and they love you even more if you have food.
  30. Understanding that others in your life may well struggle to understand what life is like for you can be difficult.
  31. Once you are visibly disabled, some strangers seem to think asking whatever questions they like about your condition is perfectly appropriate.
  32. It can sometimes be difficult watching other people do things you can't do.
  33. Some doctors are absolutely amazing and work with you to manage chronic conditions, but some can be a nightmare once you're 'complicated'.
  34. 'Interesting' is not a word you want your doctor to use about you.
  35. Doctors don't have all the answers.
  36. Some medications cause more harm than good- it can be a battle to work out if meds are right for you, and if so, which ones.
  37. Random people suggest weird 'cures' frequently, and people often make harmful suggestions with the best intentions (e.g. 'it would do you good to get some fresh air').
  38. Some girls have a scarily lacking perception of what constitutes a healthy weight and will compliment your figure even when your weight is very dangerously low due to illness.
  39. The media can be frustrating and incredibly misleading, sometimes reporting dodgy papers, and ignoring real scientific advances.
  40. Patient communities can be surprisingly fractious- the ME/CFS community frequently insult one another over definitions and what to call the condition(s).
  41. Some people think wheelchairs/scooters are inherently a really bad/scary thing, but they can actually be very enabling and allow people to get out the house- admittedly wheelchairs can be very scary with the wrong person pushing!
  42. The majority of people really do intend to be helpful and really do want to do the right thing by you.
  43. Being ill results in lots of paperwork and letters.
  44. Asking for necessary accommodations normally results in feeling like a huge inconvenience.
  45. Fatigue can be at least as disabling and intense as pain.
  46. Dealing with the relentlessness of symptoms is challenging.
  47. Nights can seem to intensify suffering.
  48. During nights awake Internet-company can be very comforting.
  49. The shared understanding among, and support of, fellow-ill-people can be surprisingly helpful.
  50. Even if you feel alone, there is always someone else out there going through similar ordeals.
  51. Opening your world up to other people can be daunting at times, but can mean more people understand your story.
  52. Putting feelings into words can be surprisingly cathartic.
  53. It's important to rest before crashing; once it has happened the damage is done.
  54. Gentle hugs help.
  55. Ill health is clearly a negative experience, but positives can come out of it.
It's a strange year to reflect back over, because the emotions I've been through have been intense. It is so nice this year to not be looking back and simply seeing how much worse my condition has got though, because, for once, I've actually had 6 months of improvement, and am better than I was this time last year!!

Sunday, 1 February 2015

One year on...

One year ago yesterday, I officially suspended studies due to drastic deterioration in my health. I'd already not really been in uni much for several months, but that was the date I signed on the dotted line and made it official. My body was broken, and I finally made the decision to put my health first and give myself the chance to heal. Despite the fact my body had basically made the decision for me (studying simply wasn't possible), making it definite and official and long-term was heart-breaking.

But a) I had no choice and b) it was the right decision.

I wish I had known then how much better things would be now, one year on. One of my greatest fears was that I would never be well enough to return to uni. But I did. Things are still very difficult and the future is still uncertain and a little bit terrifying, but I'm managing as well as I hoped I would be at this point. Realistically, I wasn't likely to be any better than I am now. I would've obviously liked a lot more, and would love to be more mobile, with fewer symptoms, but I'm back at uni full-time and just about coping. I feel at ease with everything and my symptoms are just about bearable with the medications I'm on. That's about as good as it was ever going to be in only 12 months, particularly bearing in mind the inevitable flares, and the fact my illness had basically been progressive for over 4 years.

There's still a long way to go, but I am incredibly grateful to be where I am. 1 month ago I had no idea whether I'd manage to return to full-time uni. 6 months ago I was terrified about how I'd cope with starting back at uni 3 half-days per week. 8 months ago washing my hair was a major, major challenge and I spent a majority of days in pyjamas and a majority of time in bed. 10 months ago I could barely sit up. 12 months ago I was leaving uni and feeling desperately unsure of what the future would hold. At every stage I have battled and persevered (even though often that was with pacing and rest), and eventually prevailed.

Uni continues to be a challenge, but I am enjoying it. I am facing new challenges with my speech. Independence is still a distant dream. A recent fall (and grabbing a door I was falling towards- black fingers- big mistake!) proves that remaining upright is still a considerable challenge. Walking very short distances is still very difficult and takes a lot of energy and concentration.

But I'm lucky. Really, really lucky. I can sit up, I can study, I can go outside, I can be in busy places, I can wash and dress myself, I can tolerate my symptom levels, I can get around easily on my scooter, I am happy. I have faced severe ME and, to an extent, come out the other side. All those going through the dark times, I vividly remember what it's like, but the light at the end of the tunnel will seem so much brighter because of the darkness you have been through- so get those sunglasses ready! I know I'm only a bad relapse away from ending up back there, but I can't let that haunt me and taint the good times I'm having. If it happens, it happens, but until then I'm going to live life cautiously, but as fully as I can, and appreciate and enjoy every fantastic detail.

A matter of months ago, life felt like a painful ordeal. But I have a pretty good quality of life now, and that means the world to me.

Medical update

Continuing from where I was last time I updated- my severe headaches did turn out to be the Fludrocortisone so I've been off that ever since.

Speech therapy has been going ok, but my stammer has been very variable and has been truly horrendous at times. I had one week where communication was a massive struggle. I'm finding techniques helpful though and am managing to communicate ok most of the time.

I've had an appointment with my main consultant in which we discussed how I was getting on and also my stammer. My consultant says that stammering isn't something that's typically seen in chronic fatigue, and in his opinion it's most likely to be due to the understandable stress and anxiety caused by trying to do my course with my health problems (particularly as my MRI a couple of years ago was normal), but because my Speech and Language Therapist has raised the question of neurological causes he's going to advise my GP to refer me to Neurology, just to get it checked out. I don't feel particularly stressed or anxious, and my stammer seems to vary of its own accord rather than when I'm more stressed, but I'd rather it was due to anxiety/stress than there be a neurological cause (because the conditions mentioned are rather serious). But we'll see.. Whatever the cause, I just want it to go away, or at least improve. I am, thankfully, coping a bit better with the difficulties it causes now that I'm getting used to it, which is a relief.

I'm quite relaxed about the prospect of a referral to neurology, because although it means another new doctor and more prodding and poking, it will rule things out if nothing else. There has been talk of referral to neurology before so it seems to make sense to get checked out.

I'm eating fine, I'm sleeping well and things seem fairly stable. I would class that as success! I'm grateful to my medical team and thankful things have picked up to the extent they have, plus obviously hopeful things will continue to improve!

Friday, 19 December 2014


I've been meaning to update for a while, but just haven't got round to it, so sorry about that!

Things are going fairly well really. I'm actually on the train to home-home from uni-home at the moment. Excited to have made it through my first ever uni term major-relapse-free! I've barely missed anything (*proud face*), but admittedly I have been part-time this term. I'm even more excited by the prospect of time-off though. It's certainly needed!!!

The beginning of my first term back after medical leave was undeniably incredibly difficult and pushed me absolutely to the limits of (and at times way beyond) what I could cope with physically. I survived though, my ability to flare without massively relapsing reassured me somewhat, and I was incredibly lucky that my body managed to make some improvements and over time fought back less, which is an absolute first! The middle of the term things seemed manageable, and I'd even got marginally beyond prefixing manageable with 'only just'. Just as things were starting to feel doable and I was feeling a bit more reassured and a bit less fearful of a relapse (and less haunted by the memories of how bad relapses can get), things started getting harder.

Towards the end of term, I had a really challenging few weeks, feeling like my body was flagging significantly, and feeling in need of a break! My speech in particular has been really difficult at times, and I've had days where basically every sentence has been a struggle. I find that pretty difficult, because I used to be relatively eloquent and prided myself on my ability to argue a point well; now I get people who see me stammering excessively and fighting with my words who presume I'm mentally incompetent and that's very difficult when the words are in there trying hard to get out! I'm using hand gestures and non-verbal communication a lot recently to try to get me through. I've never been so grateful for my ability to nod, shake my head, point and do a thumbs up and thumbs down, my heart absolutely drops less often now, because I know I will find a way to communicate even if it's not neatly, efficiently and the way I'd like. My second (most recent) speech therapy session was really helpful and I've learnt a few techniques to help me speak a bit more fluently and they do help, but they don't yet come at all naturally. I do feel a bit more in control though and less panicked now that I have some techniques to turn to as needed. People are generally fairly understanding/considerate about my speech difficulties, but unfortunately not everyone is. Some outright laugh, some smile in an amused way, some presume you're totally thick (particularly as I'm visibly physically disabled), some look panicked and/or perplexed, but most people are more concerned about reassuring me that it's ok (which it might be ok for them, but I'm not ok with it) and are patient and encouraging. Negative reactions are difficult, but mostly people have been great- my friends have been amazing with it, not batting an eyelid at all (I do have pretty awesome friends).

The other thing I've been having massive problems with very recently is headaches. They have been utterly awful, practically unbearable at times. I've spent the last few days speaking with various people trying to get them sorted and under control before leaving the area for a couple of weeks. I was quick to blame my newest medication- Fludrocortisone- and stopped that [edit to add: I did check with my doctor that it was safe to do so, and it was as I have only recently started on it]. 3 and a half days after stopping it the pain has lessened somewhat. I do still have a headache though and my facial pain is not as well controlled as usual. It's hard to prise things apart when things get so complicated. They thought the new medication might have caused my blood pressure to sky-rocket and that was the cause of the headache, but when tested it was still only 108/45, so on the low side if anything. The next suggestion was that I might have had a change in my glasses prescription, so I went for an eye test today (on my birthday!) to rule that out- there has been a change in my prescription but not significant enough to be causing severe headaches, thankfully all looking healthy except dry eyes though. So the mystery still isn't yet solved really. I'm thinking it's either the medication and it's taking a while to get completely out of my system, or it's my facial pain. I had already been considering changing my facial pain medication again, but I'd been hoping to not have to go through that too soon, but if it doesn't settle I think that'll have to be the next line of action.

The medication I mentioned stopping- Fludrocortisone- was intended to help my Neurally Mediated Hypotension and stop me going faint; it was hoped that this would help my other symptoms too. It possibly did help with my lightheadedness, but it has also made me feel more rough and tired than normal I think. I certainly haven't felt significantly better on it, so it wasn't overly disappointing to have to stop it, apart from in the respect that I had expected great things from it, which didn't happen.. Maybe there will be other things to try which will suit me better.

I've also started melatonin since last updating on here, and that was a really, really good decision. It helped massively with my sleep, shifting my sleep pattern significantly in the right direction. It also helped me feel a bit better during the day (because I've actually had some sleep), nights are less frustrating and days are longer and more productive, so all good! I wish I had tried it sooner, but it wasn't one of my top priorities to discuss with my consultant until I was wanting to get back into lectures, and that wasn't going to happen without a shift in my sleep pattern. I haven't had any real side effects from it at all (it's naturally occurring in the body anyway, so it's less likely to cause side effects than most meds to help with sleep); the only slight side effect I had was feeling a bit overheated after taking it- even that has settled down though.

I'm feeling in a good place mentally right now, a bit weird about the passing of time with it being my sixth birthday and Christmas ill, my fifth of each with a diagnosis, but mostly I'm just enjoying and looking forward to spending the time with friends and family. I'm delighted with how far I've come and feeling quite at ease with life really. Yes, I still have constant symptoms, some of them are out of control at the moment, and life is quite a challenge, but I'm so lucky to have amazing people around me, and I'm incredibly lucky to have clawed my way back from the depths of severe illness (even if I have only got as far as moderate- next stop mild please!).

As we reach the end of the year, I'm not sure what to make of 2014. It's been a year of absolute highs and lows. I've had months of illness of a severity I could never have accurately imagined until it happened. I've faced devastation when I had to take time out from uni, further devastation when I relapsed even further soon after, months where I was challenged continuously physically and emotionally, but also the absolute high of starting back at uni, being back with my friends and returning to some vague sort of 'normality' (if there is such a thing), and other happy, enjoyable events throughout the year. This time last year I knew I was in for a very difficult year as my body was an absolute wreck; this year I'm not sure what to expect- I'm hoping things will go smoothly as I transition from part-time back to full-time studies, but I'm also aware that I'm still very ill and things could fall apart at any point. I know that full-time studying may not be very compatible with my state of (lack of) health, but I won't know without giving it a good try. I will be very glad to put 2014, along with its difficult memories, behind me, and I'm looking forward to a fun-filled and rest-filled festive season!

Wishing everyone a fantastic Christmas time and hoping 2015 is a great year for you all!

Wednesday, 22 October 2014

I stutter../ International Stuttering Awareness Day

It's not something I have discussed with many people face-to-face, but I now have a stutter. I hate the stammer that has entered my life uninvited, I hate the fact I no longer trust that my speech will be fluent, I hate that I get nervous that I will get stuck and the fact that that makes me not want to speak at times.

It has complicated life, and my life was frankly complicated enough already,

I first noticed problems with my speech quite a few months ago now. To start with the problem was very infrequent, and I was the only one who was at all aware of it. Even now, it's far more obvious to me than whoever I'm talking to, but it's now bad, at times, to the extent that it hampers communication. In my particular case, prolonged sounds appear in my speech- I will get to a word/sound and then be unable to get past the first letter/sound. I often try to re-start the word, the phrase or the sentence to try to get past where I am stuck, but it can be challenging; if those attempts fail, then often if I take a breath and try again it all flows (e.g. I often try to re-ssssss ss re-sss try to re-sss *breath* I often try to re-start the...). If I get stuck and then panic about being stuck, getting past the sound I'm stuck on can be very difficult. At times like these, I actually like people to step in and try to finish my word for me, because otherwise the situation seems increasingly horrific, and the rest of what I need to say is likely to be negatively affected if I get stressed about being stuck. Getting stuck once can quickly escalate to getting stuck repeatedly if I stress about it, particularly if I am tired (when my speech is worse anyway).

Struggling with speech can cause real problems. An example- when checking in at hospital or collecting a prescription, a standard question is to confirm the first line of your address. When you reply ffff fff ff, due to your inability to say 'Five', it's kind of tricky. This has happened to me a couple of times now and I tend to just laugh it off, I do get there in the end!

When talking to people who stutter, my general advice would be:
1) Maintain a normal amount of eye contact, don't look away or turn away when it's obvious someone is struggling (I realise this can be a natural reaction if it feels awkward). Eye contact shows that you're still listening and are still interested to hear what they have to say. The stutterer may look away if they feel awkward, but that doesn't mean you should.
2) Try to make the situation as relaxed as possible. They're likely to be far more comfortable about their stuttering, and may actually stutter less, if you don't make them feel under any pressure and keep the atmosphere chilled.
3) Unless you know that the person is definitely ok with it, don't try to finish off their sentences, as tempting as it may be. People with stutters often get frustrated that they don't feel heard because people are forever deciding what they're going to say for them. Give these people an opportunity to speak and be heard.
4) Don't assume someone is nervous simply because they are stuttering. I have speech difficulties when talking to my closest friends and family, in situations where I am completely relaxed and comfortable. The stutter is just as likely to be causing any anxiety as it to be caused by anxiety. People can be totally confident and relaxed and still stutter.
5) Try not to laugh or make fun of someone for the way they say things. Be aware that people can feel very differently towards their speech difficulties. Some people accept and embrace them and are completely comfortable stuttering openly. Others will try to hide it or will feel awfully self-conscious or will avoid speaking for fear of stuttering. Some may be ok with you making a joke about it, but many will not. Think before you speak- it could be a sensitive subject.. That said, if someone laughs about their inability to say something or makes a joke about it, it's ok to laugh!
6) Be patient! I understand it must be frustrating when someone is not managing to get across what they're wanting to say and you're busy and it's taking a long time, but please just take the extra time to listen. Sometimes it may be a bit harder to pick out what is being said, but please do make the extra effort. You may only come across one person in your day with whom communication is difficult, but that person will likely have a number of frustrating interactions struggling to communicate with a number of different people- please show that person that there are good people who are willing to wait and listen to them.

Speech dysfluencies vary massively in severity and affect people differently. My speech problems are relatively mild, yet I find it quite difficult to live with and accept. There are other people who get stuck on every syllable but are used to their speech being the way it is and are largely unbothered by it.

I hope my speech problems will resolve with time. I have been referred for a speech therapy opinion so I'm hopeful they will be able to help. If not, I hope I will learn to live with my stammer and it will bother me less over time. I hope I will reach a point where I don't fear situations in which I am put on the spot and have to speak for myself.

Communication is vital, and struggling with something as basic as speech has made me appreciate the importance of communication so much more. It is important to remind ourselves that what is being said is far more important than the way in which it is said!

Tuesday, 7 October 2014

Trigeminal Neuralgia/facial pain Awareness

Today, October 7th, is the awareness day for trigeminal neuralgia and other facial pain conditions. I have had facial pain for several years now and I don't think I can begin to explain how severe the pain can get at times. I get very sharp, electric-shock-like pains, particularly in my temples and along my jaw, in addition to vice-like aches in my forehead and cheeks.

Soon after the pain started, I was started on Gabapentin and referred to a Maxillofacial surgeon, with a tentative provisional diagnosis of Trigeminal Neuralgia.

Once seen by the Maxillofacial surgeon I was sent for an MRI scan to rule out a cerebellopontine angle tumour and look for compression of the trigeminal nerves. It came back clear.

The conclusion was reached that my facial pain and related symptoms are, in fact, likely to be as a result of my ME/CFS, which makes sense as I get nerve pain elsewhere.

Around the same time I was developing increasing problems with the sensation in my face, in particular problems with crawling sensations and tingling in my lips and tongue.

My dose of gabapentin was adjusted up and down a few times. Higher doses sedated me and caused horrible overwhelming exhaustion, low doses didn't really work sufficiently.

Eventually (about 6 months ago) I decided to take the plunge and change medications, both because my pain wasn't managed brilliantly, and because I had concerns that the gabapentin could be contributing to my abdominal pain.

I changed to Pregabalin (Lyrica) and eventually got up to the maximum dose (lower doses didn't work sufficiently, but each increase was vile, sending me into a very ill, semi-comatose state for a week each time). My pain seemed to be under control for a short while.

Recently though, my pain has flared up again and I suffer with headaches, stabbing pains and tooth pain on a daily basis. I have had a few occasions where I've been absolutely writhing in agony, it's awful.

I think people would think my facial pain is a minor inconvenience compared to my other problems, but when it's bad, it's far more than that. It affects my quality of life significantly and the severity during shock-like episodes is certainly as severe as any pain I get resulting from my other conditions. The pain is all-encompassing and simply cannot be ignored. I quite often literally gasp with the sudden intensity of the pain. And then it goes as quickly as it came.

I'm on epilepsy medications to dampen down my nervous system to try to control the facial pain. I wouldn't risk the side effects and interactions with other meds if the pain was bearable without, but it simply isn't.

Many people have lengthy, unpleasant (unnecessary) dental treatment prior to diagnosis. Most sufferers are on daily medications. People go through deep brain surgery or have treatments to damage the nerves involved to try to relieve the pain. If you look up Trigeminal Neuralgia, you soon come across the fact that it's sometimes known as 'the suicide disease' due to the high rates of suicide in this patient population (mainly before effective medications were available, but some even now) due to the pain's severity and the condition's unpredictability. These conditions are not trivial. It's not a case of a bit of a headache or a bit of toothache. The conditions are, without doubt, often life-altering.

Thanks for reading and please do help spread the word about these conditions.

Saturday, 4 October 2014

Return to Uni following medical leave

Returning to University following medical leave has been a roller-coaster of emotions.

Firstly, I'm elated to be back. When I suspended studies and left, I was terrified I would never be well enough to manage to return. When you get the opportunity to return to what you want to do, rather than living 'the sick life', it's awesome. I couldn't wait to see my friends, and was keen to feel part of things again. I thought things would feel more normal..

And then you get back and realise 'normal' really doesn't apply to you these days. I'm part-time, doing a phased return at the moment = abnormal. I use a mobility scooter = abnormal. I'm seriously chronically ill = abnormal. I'm in a new year group with all new people = abnormal. I can't physically do what I want, when I want = abnormal. You see where I'm going.. I realised just how abnormal my situation was when I had returned to Uni and was surrounded by healthy people my own age- they have SO. MUCH. ENERGY!

I, on the other hand, am severely lacking in energy. Living away from home, I'm now very reliant on friends- they have been utterly amazing, but it's frustrating not being able to do things for myself. I'd forgotten the amount of time I spend in a typical day staring at things just out of reach, wishing they would jump into my hand. Sitting in bed at the end of the day contemplating getting changed into pyjamas is horrific- you know you're about to flare your pain up to an extent that will make it difficult to sleep for hours... Not easy.

Being chronically ill is beyond hard. You are exhausted and it's exhausting- there is so much hassle trying to sort everything and juggle things. And then the more you think about it all, the more exhausted you get, and the more difficult it becomes.. Ugh.

Being back with all the normal life stresses reminds me how incompatible stress and chronic illness are. Stress really, really flares up my symptoms. But keeping calm and relaxed is easier said than done while facing huge challenges. I consider washing and dressing huge challenges, but returning to Uni means facing challenges much greater.

It's difficult being new to a year group. It's almost tempting to creep in, hide, quietly get on with things, then creep out (although creeping quietly on a whirring mobility scooter is fairly impossible). It's particularly hard when other people already know one another. It's yet harder still when you don't trust your speech not to play up, remembering names and faces is practically impossible, and you're feeling decidedly 'different'. You feel exposed and alone.

Thankfully, my group have been lovely, and I'm lucky in that I have support workers, which means I always have someone with me, so even from day 1 I was never really actually alone- perfect!

My symptoms, on the other hand, have been far from perfect. I always knew my symptoms would increase on starting back, so it hasn't come as a huge surprise, but it's hard. Pain, fatigue and nausea, among others, have all been severe at times, and it's difficult when you know that it's something you're choosing to do that's the cause of the increase in symptoms. I don't want to cause myself more pain, but I have to accept that doing what I want to do is going to cause my symptoms to be at an even higher level than they were when I was doing very little and resting a lot. It's just the way it is. My facial pain has flared up again (despite being on maximum dose Lyrica) and I now have tinnitus- oh, the joys.

I wanted to be much healthier when I started back than I have ended up being, but you have to hope for 1 thing, expect less and accept much less quite frequently with chronic illness, in my experience. My pain and fatigue levels are still fairly nasty, I still get dizzy and nearly faint a lot, and I still feel utterly rough. On a positive note, I (briefly) met my weight target a few weeks before starting back!!! It's only taken 3.5 years, haha. I've since lost around half a stone, but at least I had got up to where I wanted, so I'm away from the danger zone! The threats of tube feeding seem like a distant memory which is rather nice!

The other fairly recent improvements were in my speech and balance. My speech got a lot less glitchy when I started wearing my compression tights following my NMH diagnosis, and I started losing my balance less often. I had also been practicing my balance too, so would like to think that also helped a bit. Both have become significantly more problematic again since starting back at Uni and getting extra-exhausted, but hopefully will improve again once my body is freaking out less- fingers crossed. Difficulty communicating because of my stutter is really frustrating and embarrassing..

Having reached a severity I can't even bare to discuss while I was on medical leave, I'm scared about ending up back there. In fact, terrified may be more accurate. An experience like that stays with you, whether you want it to or not. I faced limitations only a minority of people my age have faced, and I can tell you that it's frightening, undignified and soul-destroying. I hope no-one reading this ever ends up in that state, and if you're currently severely affected, I really honestly hope things pick up for you and wish you all the best.

Everybody has been really lovely since I started back- staff, students, everyone. I couldn't have wished for people to be kinder or more accepting. I have, however, been asked 'what happened?!' multiple times; I didn't understand what the question was getting at the first time, before eventually catching on that people were assuming I was using my scooter having had some sort of accident. It's then a bit tricky explaining that you're long-term ill and can't really stand/walk anymore as a result. Not quite as exciting an explanation as they were anticipating..

It's all awkward really. How much do I tell people about where I've been? I'm more than happy to be honest with them, but I appreciate that chronic illness is sometimes an awkward thing to talk about. I don't want to sound moany, but I also don't want to make light of what was, and continues to be, a seriously difficult period of my life.

I'm also, understandably, getting people asking how things are going since starting back. The truth is, I'm not really sure. I'm doing very little yet it's really hard, symptoms are pretty vile, new/recurring symptoms are a concern, I'm having to medicate my pain more regularly due to the severity, and I'm struggling. But I expected that. The thing I don't know is whether it is sustainable. I honestly don't know whether my body can cope with this long-term.

I don't know whether things are likely to get easier or get harder. If things get easier I'll be able to increase what I'm doing and possibly get back to full-time by January, which is what I'm hoping; if things get much harder, I'll be left with no option but to suspend studies again, and then questions would have to be asked about whether getting through my course is a realistic aim. I've had a few appointments that have made me wonder whether I'm being a bit overly-optimistic about my chances of the return to uni working out, but we'll just have to see how things go. At the moment, things do, unfortunately, seem to be getting worse. The last week or so, I've been managing less and my symptoms have been getting significantly worse. It's really worrying and disappointing. I'm clinging onto the hope that it's just a flare and things will pick up again, but I'm honestly not sure..

So yes, that's the truth, although that's not necessarily the response that people are likely to get in person. I'm happy to admit that it's hard, but I like to give the impression that I'm coping, which I am- sort of. I don't know whether a relapse is imminent or not. I was asked in an appointment recently whether I could see crashes coming and the honest answer, even after 5 years, is still no, really. Sometimes, they just happen. I'm not ready- physically or emotionally, to face a serious crash, so I seriously hope it's a while before the next one inevitably happens!

To anybody who reads this because they are planning a return to uni following medical leave, my advice would be:
1) accept that it will be hard. Really hard. Get that firmly accepted before starting back.
2) have whatever you would normally use to get through flares to hand (painkillers, heat pack, easy meals etc), and be prepared to use them to help you through the first few weeks.
3) don't panic if symptoms are worse initially when you first start back, it's bound to be a shock to the system. 'If symptoms persist consult your doctor' or consider reducing your workload a bit.
4) prepare for your return in advance (if you've got time). Get your brain back to speed again by doing a bit of reading. Read over things that you will need to know. If you're well enough, build up your physical strength and stamina, even if that's just practising being sat up long enough to get through lectures. If it's all rather last minute, don't panic, just get yourself as prepared as you can be given your circumstances.
5) make sure those who will be supporting you- at home and at uni- are aware of where you're at physically and the challenges you're going to face physically, mentally and emotionally. They're going to need to be your cheerleaders, supporting you through when things get tough.
6) agree on a suitable timetable. Consider part-time options if you're not well enough for full-time.
7) get appropriate support agreed and in place. Think about DSAs, support workers etc. Disability advisors are absolute stars when it comes to sorting out all this stuff.
8) keep your fingers crossed (not literally- don't wreck your hands before you've started!). You can't control how your body will react, so it's all partly down to luck. Give yourself the best chance you can of things working out and then simply hope for the best- it's all you can do!
9) look after yourself best you can. It goes without saying that you don't want to risk ending up back on medical leave again.. It's not a sprint, it's a marathon- take things steady. Monitor how you're getting on and let people know early if alarm bells should be ringing. Stop and rest as necessary- missing a lecture is far less disastrous than relapsing from attending a lecture when not well enough. 
10) enjoy it!!! You're starting back because you want to be there- appreciate being back, remember how much you longed to be there while you were off (and remind yourself of this repeatedly when you're trudging your way through a difficult assignment..)!

I certainly don't regret starting back. It's great, I love immersing myself in my work and almost forgetting about the challenges of life for a while. It's amazing to feel like I have a sort-of purpose and a proper place in society and the outside world again. It's a relief to finally look in my calendar and see something other than medical appointments. 

It's hard (understatement), but of course that's the case! I only just improved enough to start back so I was hardly likely to be frolicking around doing a full-time timetable and finding it all a doddle. I'm doing a very reduced timetable and it's very much challenging my limits. But that's fine-ish, it's my choice, I want to be working at the maximum I can manage. I'm managing to study a little, and I'm enjoying it, which is great! Obviously I'd love to think I'll start to improve and will get back up to a full-time timetable and manage it comfortably, but that feels a world away from where I'm at at the moment, so whether that will happen remains to be seen!

I'm starting to realise that returning to uni is all well and good, but remaining at uni is the real challenge... Fingers crossed!!!

To everyone else with a chronic illness returning to studies or starting uni for the first time, I wish you SO much luck and hope it all works out for you!