Tuesday, 23 December 2014
The Great Hydrotherapy Debate is one which exists not only in my head (as most debates do) but also in the wider community of medical professionals and those who have M.E.
There are many arguments for and against it, which you can easily find....in general patients will tell you not to touch it and medical professionals will book you right in. But this blog was never meant to be about assembling research, so I will concentrate on my own experience of Hydrotherapy.
It was recommended to me by many medical professionals. First of all I tried 'dry land' physio. This didn't work for me because I just could not sustain being upright and doing the most basic of exercises. I would break out in a freezing cold sweat (and when I say sweat I mean the clothes-soaking-wet-in minutes type sweating), shivering, passing out and apologising all the while for wasting the physio's time. The physio (who was lovely) referred me for hydrotherapy as she felt it could be a more gentle introduction to exercise for me.
It seemed like a good idea. I love having a bath- it makes me feel very relaxed and really helps with pain and spasms, if only in the short term. So in a way I really fancied the opportunity to try it out. My family and friends were happy that I was going and were all hoping for the best. I tried to explain about Graded Exercise Therapy (GET) and how it had been shown to be damaging for many patients, how it can cause relapse and how I was worried that going to hydro might make me worse. But there was a general feeling of 'if the doctor recommended it then it must be ok'.
So to understand how hard hydro is for someone with severe M.E you have to remember what my life is like. I am almost entirely housebound and spend many many days in bed. Getting dressed into slouchy house clothes takes up loads of energy for me...and I don't always manage it. I can't get up and down my stairs at home easily etc.... Now for hydro, I had to get up and get dressed, eat breakfast, be driven across town, get out of the car, get to the building where the pool is, sit upright in the waiting room, get to the pool, get changed, and walk up and down steps to get into the pool. Already I am well outwith my energy envelope and I have only just made it to the pool. I have not even started the session yet.
None of this exertion is taken into account by the physios who simply do not seem to understand M.E. I was so exhausted I couldn't speak on the way home or anything, I was just slumped on the seat and went straight to bed, where I remained for much of the following week. I phoned to say I was too unwell to go the following week, they asked me was I 'just tired'. I explained all the neuro symptoms I had been suffering from- horrendous headache, leg pain, disrupted digestion and bladder function, tremor, slurred speech etc.
At the next session the physio was better, we did much less and talked about building up slowly etc. However I had the same effects afterwards, despite doing much less, and had to cancel the following week's appointment again.
I managed fortnightly for 5 sessions but I was unable to do any of the other things I had been managing at home, like making a sandwich for lunch. I couldn't even sit and watch TV with my husband and was in bed for much of the time.
In the end I called the physio and we decided I should take a break until the New Year and see what happens with my symptoms. Well after a very rocky few weeks I have started to get back to my usual self (still poorly but on a more even keel, able to get out of bed most days and potter around the house). To me it is clear that the hydrotherapy was making my M.E worse.
So why is there a debate? Isn't it obvious that the hydrotherapy is causing relapse and should be avoided? Yes. But. My legs feel stronger. I have not had to rely on my crutches so much and people have noticed that my walking is a bit better. Is this a result of the hydrotherapy... possibly.
And the rehab doctor I'm seeing is pushing for it. When I told him I couldn't make all the sessions he told me I 'just had to try because it will help'.He held his fist up with a determined expression on his face when he told me I had to try. Even thinking about it makes me angry as I do nothing BUT try, every minute of every day.
And it feels so good to be actively DOING SOMETHING to help fight this illness.... even if it is the wrong thing to be doing. Which probably sounds mad. It's so frustrating to be left to manage this illness mostly on my own.
But this is one thing I have tried that I may have to refuse to try again, even if that means losing the support of the rehab team and being seen as not trying hard enough to get better.
It upsets me that I have to rely on my own research and judgement to decide on my treatment, to fight for what works and to fight not to be pushed onto things which harm. We are crying out for more understanding and better treatment for this disease, rather than judgement and blame.
We've still got a long way to go.
Monday, 24 November 2014
There now follows a story about bedsocks.
A few years ago I took suddenly and seriously unwell whilst at work. I was taken by ambulance to the nearest hospital to my workplace. I spent a week in an acute admissions ward, being woken hourly, day and night to have lights shone in my eyes and bloods taken. There were scans and talk of brain tumours and stroke. Things were rough with my condition and I had the most frightening experience of my entire life, which I am not ready to tell you about yet.
The care in this ward was excellent, however as it was an acute admissions ward patients were coming and going all through the night and machines were beeping and buzzing. The bright lights were kept on all night. Visiting hours were strict and there was no visiting at all on certain days. I couldn't handle the emotions and stress and broke down, causing my parents to insist I was moved to a ward with more visiting hours.
How is this a story about bedsocks? Stay with me.... they're coming soon.....
Before I understood what was happening I was wheeled into the ward next door. This ward was not shiny and clean, sparkling white or bright at all. In fact it was mostly beige, brown and tired. I panicked, had I gone from the frying pan into the fire? Until, that is, I met someone very special.... I will refer to her as C.
She was like no one I had ever known before. Slouched back on the bed eating sweets, she welcomed me to the ward as if it were her own home. She introduced me to the other bed dwellers, who either nodded and said hi or stared vacantly into space. She told me who to watch (one lady went wandering during the night and stole stuff, one lady had dementia and had soiled all of C's clothes and the other lady was very poorly and unresponsive). It was quite a collection! C had been there for many weeks and knew the ropes. I was the newbie and she took me under her wing.
The care in this ward was unacceptably poor. No-one wore name badges, people's medicines were lost and no effort was made to find them, auxiliary nurses spoke loudly through the night with no regard for patients trying to sleep. I heard C stick up for the lady who was too poorly to fight her own corner, and one night she sat and held the hand of a lady who was distressed and crying. She held her through the night and got no sleep at all, but sleep was less important to C than comforting others. I don't know what would have happened if she hadn't been there, I was too ill to get out of bed and when I buzzed the nurse she came in, looked and walked away.
I could tell you much more about C. I could tell you how she had a football team dressing gown and tattoos. How she spoke with a very strong accent and how I automatically judged her as 'not my kind of person'. How she addressed my dad as 'buddy' or 'bud', and how it made her laugh to do so because she thought he looked terribly posh. She imagined he had never been called this in his life before, and I think she might have been right. But I think I'll stop there, as somehow it feels like betraying her trust to tell you more.
Except for one more fact. When her clothes were soiled (by the wayward patient mentioned above) they were sent to the hospital laundry. They all came back, except for her bedsocks. (See- I told you bedsocks would feature eventually!) Every day I heard her ask if they had been located. Every day she was told they were still lost. Her family lived far away and didn't visit so she couldn't ask them to bring another pair. I wondered if anyone was even looking.
I had asked my family to bring in my own favourite bedsocks and had been wearing them every day. They were a gift from my husband one year and nothing fancy or expensive, but were just the cosiest bedsocks I had ever owned. I actually loved them. I decided to wash them through, and once they were dry I tried to give them to C. Of course she wouldn't accept them as she didn't want my feet to be cold.
I was waiting on a bed in a specialist hospital for further investigations, and one day when C was out for a cigarette some ambulance men appeared with a stretcher... "Your bed is ready...Can you transfer yourself?" and before I knew it I was on my way to the other hospital. I was distraught- I never got to say bye! I just had time to leave the bedsocks on her bed before I was whisked away. But I needn't have worried, after arriving in my new hospital I received a phone call from C with her mobile number on it. I wasn't getting away THAT easily!
We stayed in touch by text, she made it home but ended up back in the hospital. I tried to visit her but she was isolated in a room of her own and only immediate family were allowed in, and only if they wore masks. I couldn't really understand why and her texts weren't making much sense. She then got home again and we tried to arrange a meet up.
I hadn't heard from her for a couple of months and decided to look at her facebook page. There was an 'RIP' message on there..... the floor fell away from me. How can she have died? How can I not have known? What happened? When? How? How could I find out? I looked up the local paper and found an obituary. I left a message on her page, I messaged someone who appeared to be her sister, but I couldn't be sure as I was going by FB posts. Would I ever know what happened to her?
I did find out in the end and managed to tell her sister what a comfort and joy it was to have known C. It made me feel better that her family knew how much I thought of her. And it sounds stupid, but all I could think about was her feet. Were they cold? Please don't let them have been cold. Please let my bedsocks have brought her some comfort, warmth and heat in her difficult days, please let them have made her feel loved.
This is not only a story about bedsocks, but a reminder of how the little things in life are actually the big things. I would never usually have spoken to someone like C, but now I realise how snobby that would have been. What a special person she was. What a comfort it has given me knowing that her feet were warm in her hospital bed. How silly.
Sunday, 2 November 2014
But now things are very different. I cannot remember the last time I made it to a bar or club. I only make it out of the house about once a week, usually to medical appointments or short trips with friends, and I always have to have someone with me. When I do make it out to social events, I am either in my wheelchair or plonked in a chair, often in the corner. Sometimes by the time I get there I am too tired to talk very much, and I find making conversation with strangers very draining.
You'd be surprised how exhausting it is to form facial expressions too- when I'm really tired I can't make a lot of facial expressions and end up looking 'glaikit'... a good Scots word for looking vacant. I often tell my family 'I'm not sad, I just don't have enough energy for facial expressions right now'.
Then there is the problem of the music. I love music, I really do. I have always listened to music, played instruments and danced around the kitchen but I can only listen to fairly calm music now and only at a very low volume. If there's music playing I just don't have the energy to speak over the top of it, and if I manage to it sometimes makes my throat scratchy and sore (and recently has given me chest pains like a chest infection).
And I am very sensitive to light. People think my sensitivity to light and loud noises is a dislike thing, or some sort of grumpiness. But being exposed to bright light and noise can cause real and painful physical sensations in my body which are nothing to do with preferences.
My friends are brilliant with all of this, but I often wonder what people who didn't know me 'Pre-M.E' must think of me. Do they think I'm quiet and shy? Or fussy? A diva? Or just plain weird? Am I the girl in the corner?
I'm still the same girl that I always was.... I just have many new limitations now. I suppose you should never judge a book by it's cover.
Thursday, 16 October 2014
I have just realised something.
I am seriously unwell!
Why did it take so long for this realisation to hit me? I have been acutely ill for nearly three years now, and yet I have only just grasped it fully. Maybe because I've been too scared. Maybe because I've been too busy surviving. Or maybe because I've been stuck in full-blown, head-in-the-sand denial.
In fact, I think it is because I am programmed to adapt and deal with all that life throws at me. In the beginning my friends and doctors marvelled at how 'matter-of-fact' I was about it all... (except the ones who were subject to my occasional massive, teary, snottery outbursts of despair). But you can get stuck in this mode and fail to see the gravity of the situation. I am very shortly going to be retiring from working life at the age of 32. I am struggling to maintain normal life on any level. EVERYTHING is hard. It's like wading through a bog with a terrible hangover (but still a bit drunk) whilst having the flu after running a marathon wearing a diving bell. With jetlag.
In the beginning it's all about adapting, adjusting, problem solving, sorting things out. Information gathering. The useful stuff. But what about when that stage is finished and you've settled into your new life?
I thought I had this sussed. Turns out we're gonna need a bigger boat.
Friday, 10 October 2014
Friday, 26 September 2014
I have come to my parent's seaside house to getaway for a while as my soul is poorly. I am so stressed and in need of a break- I need to hide under a rock, or wrap myself up and spend a few days sitting on the beach and staring out at the ocean.
You would think that resting all the time at home would be relaxing, wouldn't you? But being ill all the time is very stressful. I am being forced by this illness into making all sorts of major (and in some cases permanent) decisions about my life... decisions which are forcing me to think about prognosis and speak to my doctors more than usual.
Decisions are very hard for me, it doesn't matter how big or how small the decision is, it tortures me. It's worse if there are only two options... And worse again with no certainty to help you do the right thing. When I'm here by the sea I don't need to make decisions. I don't need to do anything at all, except just be.
We have a morning system here- I text my dad (once I hear him up and about) a coded message which means 'please bring me a cup of tea and some toast'. Its not long before I hear the kettle boiling. At home I wake at 6am, here if I wake at that time I usually fall back asleep until a more reasonable time.
No one asks anything of me, any decisions that need to be made can be bounced off of my mum and dad immediately. I don't need to answer the door or speak to anyone or struggle to make lunch. Everything about me is accepted and accommodated. Just like at home with D, but here the outside world doesn't interfere.
My soul can rest. The stress is still there, but I can let the sea air nourish and heal me, and build me up for the next round of battle.
So if you need me I'll be over there, gazing at the sea, emptying my mind of thoughts and worries. You probably won't want to disturb me....
Monday, 22 September 2014
17. A long, deep soak in the bath with lots of bubbles
18. Listening to a favourite song
19. Buying wool
20. Sitting in the shade on a beach
21. Seeing a fox
22. Walking in the snow
23. Walking anywhere
24. Getting a massage
25. Pottering in the garden
27. Feeling loved
28. Miniature versions of things
29. Talking to children
30. Being outside
31. Buying craft books
32. Reading craft books
33. Making someone smile
34. Being by a river
35. Drinking tea
36. Hearing about random acts of kindness
37. My family being happy
38. Hearing about my friends doing well
39. When I make an improvement in my health
40. Receiving parcels in the post
41. Being near animals
Saturday, 20 September 2014
There are two types of people- the ones who will ask me a string of questions so long that I feel like I'm on the specialist subject challenge on Mastermind, and the ones who go out of their way not to 'mention the war'. As I grow older I have learnt to accept people the way they are, and so both ways are fine with me. In general though I don't talk about it unless I'm asked, it takes up enough of my life and when I'm with my friends it's fun to act like a normal human being and have a laugh and get some respite away from it all.
By far the most common question I am asked though is "What do you DO all day?" People are genuinely fascinated by this, which I find quite funny. But what you must understand is that the reason that a day alone in your house seems like such a long time to fill is that you are imagining it as a well, healthy person. Things are very different for a poorly bod.
When I was first ill I felt absolutely grim all day and mostly just lay in bed, sleeping or maybe doing 5-10 minutes of knitting. Too much made me feel worse again. There was no reading, watching films etc. the days were long and unpleasant, just getting through them was the main target. The most exciting thing to happen would be getting some food brought to me or a cup of tea. But now, with successful pacing and improvement in the condition I am managing to do more with my time. The trick is to intersperse lots of rest breaks and not to plan too much... and to be creative- don't focus on the 'I can't'. If you can't manage something, see if you can adapt it a bit to suit your abilities that day. Try not to be a perfectionist (yeah right) and try not to have such high expectations of yourself (double yeah right!!)
Firstly, you'd be surprised how much you can do lying down! I am writing this blog post lying down, propped up on cushions in my bed. Most people who know me know about how my mum re-taught me to knit while I was unwell. That is all done horizontally. I couldn't manage the long needles at first whilst lying down but that didn't stop me- my dad trimmed them down for me with his saw! It was also too cognitively challenging- I combated this by doing it in short spurts, and whenever I made myself poorly with it I got a lecture from my mum along the lines of "you've done too much knitting, you've made yourself ill!" (in a cross voice). Gradually over time I was able to do more, and learnt to follow patterns and then to crochet. I made presents for people and that made me feel more a part of the outside world again. I won't bore you with the knitty-gritty (groan!) but you can read more here if you so desire.The important thing is that if I feel like it I do a little, if I don't then it waits for another day. Even a little each day soon builds up!
|Snakes in a hospital bed (the sequel to |
snakes on a plane)
|Bed guitar. Like air guitar, only cooler. |
(Guitar became too physical, I am trying the mandolin now instead!)
What else do I do all day? Mostly I am unable to move around too much, and now I have a bed downstairs. The plan was to go downstairs in the morning and spend the day there, as my legs and energy levels aren't up to going up and down the stairs. I planned this thinking I could take my craft projects downstairs or watch tv, going to bed when I needed to without having to tackle the stairs. In practise though, I don't make it down the stairs every day. But when I do, I have my lovely cosy bed to retire to!
I try to pad around the house to keep my legs moving a little, although it hurts if I walk too much, it hurts more if they seize up. I now have a beautiful garden to think about and keep watered and maintained. I find that spending five minutes a time just hosing things down or pruning a plant keeps things moving forward. When it is sunny I love to lie outside in my bed in the shade, enjoying the fresh air. That is my idea of bliss!
|Cold day in the garden.....|
|Hot day in the garden...|
I write. I started my blogs- I write a few sentences at a time and save it as a draft, adding to it as and when I can manage....I have no deadlines to meet. It helps me to feel like a part of the outside world, and may offer support or a smile to someone out there. It gives me something to do and helps me to express some of the ideas and thoughts that are jumbling around in my head. My other blog is here.I write crochet patterns, it's really challenging and each one takes weeks to complete, but it feels like a real achievement. I also write letters to my friends, this takes a long time so I usually spread it over a few days, especially as writing by hand is difficult with the muscles involved. I also write poetry but only when I feel inspired!
Then there are puzzles- I think it's important to try to do things that work the brain in order to keep the cells working and developing. I count it as a good brain day if I can do a sudoku and get it right. Unfortunately it is rare, and it's frustrating as I used to do the fiendish ones before I was ill! I have been gifted a collection of jigsaws, which are challenging both cognitively (the concentration makes my head hurt!) and physically (I have to sit up at a table for this and look- my eyes get very tired and sore and I can only sit upright for short times). So jigsaws are a rare challenge, although I just finished one the other day. They sit for weeks on the kitchen table... but a jigsaw in bed would be disastrous I think.
I love to read and can now read actual books again (yay!) but have to limit myself to little bits at a time. I can mostly follow what's going on but can't read anything too intellectually stimulating. If it's a bad brain day I leave reading for a time when I am a bit more switched on. Generally by the time I finish a book I would struggle to tell you the finer points of the plot, but looking on the bright side this means I can read it and enjoy it all over again in the future! How I missed my books!
And don't forget- things take much longer when you have M.E. Showers take ages and there is much resting needed afterwards..... getting dressed takes a while.... and when you add these to all the time needed for resting, there really isn't as much time to fill as you might think.
SoI have given you examples of all the things I can do, but I don't do all of them every day. On poorly days I do NONE of them! But it's not all about doing, there is also being. I enjoy the little things- the sunlight through the french doors, the sound of the birds, a new flower on a plant, a visit from a friend, an unexpected card through the door. I meditate- I love mindfulness, it makes me feel calm, peaceful and complete the way I am. It has helped me hugely in accepting my illness and my new life, which now includes lots of silence and long periods in my own company.
Today I woke up at 8am and had breakfast. I went back to sleep. I finished off this blog piece and D brought me lunch (I'm still in bed). In the afternoon I will maybe have a bath and by the time I rest it will be dinner time... I think I'll manage to sit at the table tonight (on bad days all my meals are in bed). Tonight I'll lie on the couch and we might watch a film, with me knitting away while I watch. A day in the life of me. Despite the pain and illness it's not a bad wee life.
And no matter when it happens, getting a cup of tea will always be exciting in my book.
Wednesday, 17 September 2014
Society is not geared up for the kind of chronic illness that lasts indefinitely and has no certain path of recovery. People are more familiar with a different pattern- someone gets ill, then that same someone either recovers, quickly or slowly but with a definite upward trend, or is told they have a terminal illness. This kind of certainty is impossible with M.E. It might get better, it might get worse or it might fluctuate wildly within the month, the week or even the day. And it will probably drag on for years. This can be difficult for others to understand and cope with.
When you are first ill people come to visit, send cards, offer to do shopping, make a special effort with social arrangements (such as arranging to visit you instead of meeting in town for a cuppa) and generally offer support. But you carry on needing this kind of support long after most people would have recovered.
The hardest thing of all is to ask for this support, or accept it when it is offered. I am lucky enough to have had more good surprises than bad. I have a loving and understanding family, a solid network of friends and a periphery of more distant, but hugely important people cheering me on. Friends of my parents, members of my orchestra, fellow crafters. A wonderful neighbour I can rely on to help me out or just share a cuppa and a laugh with. A network of online friends whom I can discuss the highs and lows of this illness with. I have been touched by the amount of caring people cheering me on.
But still the thought of those who have let me down niggles at the back of my mind. I try to excuse them- they don't understand and my expectations of people have always been too high. In the end perhaps we were not friends in the first place as I had thought, but just acquaintances. I am glad to have found that out. And anyway, I try to dwell on the good surprises, the people who have been there helping me through, because they're the ones that matter.
I may not be able to pay back your help just now, but I will never forget it. I can't go out partying like I used to, but you bringing the party (albeit a quiet, M.E friendly one) to me means so much. A cuppa, a chat, a laugh, a card through the door, even a text means the world to me. It shows me I am not gone from this world.
Friendships must change, but they can still be rewarding and fulfilling on both sides. Thank you for making the change.
And for those that have let me down- well, it's never too late.
Sunday, 14 September 2014
One day this all stops. You cannot even get out of bed to go to the loo, never mind going to work. You are no longer a superhero. Or are you?
Being sick long term is bloomin hard work. You can't clock ofF at the end of the day, the nights are often harder than the days. You battle daily symptoms and you are never sure what to expect each day. It could be heart problems and a temperature one day with swollen glands and flu-like symptoms, the next day might be pain, stomach and bladder problems and headaches. The next day could be a migraine, shortness of breath and chest pain, then the next day might be extreme sensitivity to light, palpitations, pain, seizures and blackouts. If you're like many M.E sufferers, you might have all of these symptoms at the same time.
At my worst I couldn't sit up in bed. I couldn't talk, chew, go to the toilet by myself, have a shower or bath (my one great love... mmmmm.... baths...), brush my hair or get dressed. I couldn't watch telly (too stimulating), read a book or even do a simple puzzle. I just had to lie there. So you can imagine how appreciative you become of the 'little things'. Making a slice of toast and cup of tea, having a shower by yourself (just unfortunate that you forgot to take your pyjamas off, such was the concentration required to get in and turn the water on), blow drying your hair, phoning a friend.
This is the real superhero stuff right here.
Then there is the admin. Sick notes from the doctor, prescriptions, appointments, different drugs and side effects, coping with disbelief, attending work absence meetings. Managing the GP, paperwork for blue badge, benefits, assessments, applications, sorting out mobility aids, household aids, arranging carers. Each of these things is a mountain to climb with the brain fog and fatigue of M.E.
And the emotions.... The feeling of loss, grief, mourning for your old life. Loss of 'friends' who don't or won't understand. Boredom, frustration, constant feeling of guilt about inconveniencing everyone who's caring for you or cancelling arrangements at the last minute, the worry and fear about the future. Coping with the lack of medical research and disbelief from the people who are supposed to help you.
So- flying? Fighting baddies? Spidey senses? Nah. If you can manage to survive as an M.E sufferer for even one day, you are a superhero. Just remember not to wear your pyjamas in the shower.
Yesterday on FB a mindfulness friend of mine posted this picture:
Before I was ill I did none of these things. And yes, it is truly awful feeling this level of rubbishness day after day. But... I cannot help but see the positives too. This quote couold be describing me on certain days, with nowhere to be, no pressures or responsibilities and every opportunity to just simply be.
On certain days, when my mind feels good, and I have meditated and enjoyed the still, when I have things to do such as some crafting or an old film, things could be nice. I mostly have no-one to share this with though as most of society is out working, but sometimes, just sometimes, it feels pretty good to have nowhere to be, nothing to do and time just to be.
Saturday, 30 August 2014
But sometimes I wonder if my focus is all wrong. I don't feel sorry for myself, but I feel overwhelming sadness for my friends with M.E whose lives have been torn apart like mine has. I feel so upset for them being young and missing out on everything that normal youngsters do. Losing their jobs, their cars, their independence. I see them being strong and it inspires me. But I do not see myself in the same way. I am just me, getting on with things, taking each day at a time. Why would anyone be sad for me? I'm fine!
Self-pity is very far down the list for me. I feel guilt for putting my family through the stress and worry of seeing me so unwell and having to care for me. I feel sad for them to have to see their wife/ daughter/ sister/ auntie/ grand-daughter/ friend so helpless and needy. I feel sorry for abandoning the children I taught and sadness at how easily I was forgotten and replaced.
I worry all the time. I worry about how my parents are coping. I worry about if my husband is getting enough rest. I worry about what people think when I say I will do something and then cancel. I worry about my friends and what they think of me. I don't really worry about myself, because if I started I wouldn't know how to stop.
I hold it all together for as long as I can when I'm with others, hiding the pain and discomfort until they are gone, saving it all up for when I am on my own and can rest and recover.
How can I feel sorry for myself when I'm so busy worrying about everyone else? Don't worry about me, I'm fine.