Thursday, 31 December 2015

Update: new year and hospital stay etc

It's been a long while since I've sat and poured my heart out here on my blog, but a lot has happened in terms of my health in recent months, and as it's New Year's Eve (a classic time for some reflection), I think the time has come..

On 7th October I was very suddenly and unexpectedly taken very seriously ill whilst at university. It was a very scary experience, and one that I will never forget. I haven't taken a single normal step since then, and there has only been one day since then (22nd October) that I have taken any independent steps at all. Pretty terrifying..

When I was initially taken ill, I found out what it's like to be lying in Resus causing all the alarms to go off, and I never want to go there ever again. In recent months I have discovered what it's like to lie motionless, unable to move or communicate with the people around you. I know what it's like to have a doctor causing you very significant pain (to try to get a response) and be unable to even flinch. I've been through things that were fairly traumatic to be honest, and it's difficult to move on from them.

I was in hospital for 69 long days- nearly 1/5 of 2015. I met some amazing people- both fellow patients and staff. I was looked after brilliantly- not faultlessly, but brilliantly. The staff tried hard to do their best for me; there were things to do with communication, policies, discharge planning and lack of answers etc that frustrated me beyond belief, but the individuals involved in my care (physios, nurses, healthcare assistants, doctors etc etc) were mostly amazing. Unfortunately I was very broken, in a very far from straightforward way, so despite being sure in the first 24 hours that I'd leave 'fixed', it became clear in subsequent weeks and months that that simply wasn't going to be the case.

When I first arrived onto the neurology ward after being assessed, I was in a bad way. I had to be slid on boards between beds, it took 2 people to get me into a wheelchair, my jaw was seized shut, the only way to get anything into me was intravenously, I had limited mobility to even move in bed, my blood pressure was through the floor and I felt incredibly unwell. I've come a long way since then, but I still can't stand without triggering problems, I'm very tired and sleepy, and I lack independence.

The thing that I really struggled with was the indignity. You don't expect to suddenly, with no warning, need help with everything, including washing and dressing. Bed pans, hoists, slide sheets etc are just not things you expect to suddenly require. It's scary to be hanging in a hoist feeling complete out of control of both your body and your life. I'm glad I'm so small otherwise they'd have had to hoist me etc far more frequently. I found all that side of things enormously difficult- you just don't expect to become immobile and lack any independence at the age of 23. I'm so incredibly grateful to be largely past that stage!

I'm currently a full-time wheelchair user, and it has made me realise how incredibly fortunate I had been to have about 20m of mobility and the ability to climb 1 flight of stairs. Both were with difficulty and pain, but to be back in that situation now would be incredible. Places aren't particularly accessible when you have limited mobility, let alone when you have none..

I think with significant illness, it's always difficult not to look at all you've lost. Chronic illness steals a lot, particularly when it worsens over time. I had a lot to be thankful for before all this happened, and I don't think I realised that enough. But at the same time, at the moment I'm looking at the challenges my recent health problems have caused, and I realise it's only natural. Before I mourned my healthy life, now I mourn what had become my 'new normal' too.

We're now entering 2016 and that's scary. Some of the challenges I have faced during 2015 have been so unexpected and unimaginable that it's hard not to be a little concerned about what 2016 could throw at me. It's not going to be an easy year, as I still have my rehabilitation to go back to, and with all I've been through when trying with physio so far, it seems highly unlikely that it will be a breeze!

I need to get used to standing again, redevelop some balance and learn to walk again. I also hope to regain greater control over my body and my symptoms with the help of my medical team. In october I learned to stand and take steps and got to the point of taking independent steps on one day, but then had a setback and had to start the process of learning to stand and take aided steps again the next day. Over subsequent weeks I eventually reached a point where standing was making me too ridiculously unwell, and I was discharged from hospital as a full-time wheelchair user, but able to make unaided transfers a majority of the time. I want to get back to the situation I was in before all this happened, and I know it's going to be a gruelling and painful process, with plenty of ups and downs!

Yes, 2016 scares me. But it's coming whether I like it or not, and I just have to hope that this time next year things are looking remarkably different. For now, I just want to sincerely thank all my friends and family for their amazing support during the challenges of 2015, and thank you in advance for helping me through the challenges to come. I'm incredibly lucky and grateful to have such amazing people around me, and I honestly couldn't have coped with all that life has thrown at me recently without you. Thank you for the little messages of support, for the shoulders to cry on, for the hugs, for the cards, for the chats, for keeping me in touch with normal life, for celebrating my successes with me and giving me distractions from all this rubbish. To literally everyone who has touched my life to any extent in recent months- thank you so so so much!

PS I know I haven't discussed diagnoses etc, but that's a post in itself as it's all complicated, and to a large extent the labels basically mean 'we know you're very ill and debilitated but medicine doesn't know enough to explain how or why yet'- much like my CFS really.. I do have explanations, which I'm sure I'll share with you all soon, but there are also lots of unanswered questions, and we don't know to what extent my pre-existing conditions (CFS/NMH) are influencing things. I seem to have now accumulated nearly a whole alphabet of diagnoses- eek..

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!