Friday, 29 June 2018
Although the starting bar for the CFS Clinic was low, my appointment with the consultant fell way below my expectations and I left the appointment almost in tears. There was no real support or understanding, and it felt to me as if the consultant was implying I was just plain lazy the entire time!
The use of a wheelchair isn't advocated, and it felt as if they thought I wanted to be using it, which is so far from the truth it's unbelievable. I do not want to be reliant on a wheelchair, and thus someone else to push it, in order for me to be able to get out of the house. I had been warned this would most likely be their attitude but it still stung when I found myself in the room being told it for myself.
When I described what I do in a day generally, the consultant said they want me doing more (as if I don't want to be doing more!) I tried to explain that doing any more than that, which I do do on occasion, utterly wipes me out so I can't even do the basics the next day but that didn't seem to matter.
I was told that they don't advocate pushing through the fatigue and flaring symptoms, and yet when I was told about Graded Exercise Therapy and doing it with an Occupational Therapist apparently if an increase in activity is agreed, it has to be done on good days and bad days. Now I don't know about you but that sounds awfully like if I felt it was too much on a bad day I'd have to do it anyway!
The other thing that got my goat, so to speak, was the attitude towards my diet, or more specifically the amount I eat. For the record I tend to eat three decent meals a day, with the occasional snack. But I'm not one for snacking between meals, never have been. Sometimes I stick with eating little and often because I can't manage three decent meals. Other times no matter what I do I get dizzy after eating! But this didn't matter to the consultant I saw. It seems I just need to tell myself I need to eat an afternoon snack, or eat a little more, and my problem will be solved!
After that appointment I was left feeling hopeless, upset and rather angry. I was honestly ready to give up on the clinic, but I attended my next appointment with the therapist I'd seen the first time I went and that went a little better.
I insisted someone stayed in the room with me for the appointment that time though, having seen the consultant on my own and feeling railroaded the way I did, I wanted someone there for moral support, and who could also act as an extra memory aid as my ability to remember everything, even stuff that's only just happened, is pretty poor.
I told the therapist my concerns and she appeared to listen, before explaining that the occupational therapist's approach is more flexible than what the consultant seemed to suggest. It's all about finding a baseline of activity I can manage without negative effects and building on it. They recognise that there are some events which are unavoidable, such as a day out at a wedding being bridesmaid (something I did during May, loved every minute, but also suffered greatly the following week) and that activity might be reduced in the days that follow.
Now to me this sounds a lot more like what I am used to doing; basically a mixture of pacing and gradually increasing my activity. Occasionally pushing myself to see if I can manage that bit more with little or no lingering negative effects on my symptoms. And so I am now awaiting that occupational therapist appointment to appear in the post box. I'm going to see what they say and how things go, always having someone with me at the appointments who can speak up if necessary and say if it is making me worse. The irony being if it does make me worse I won't have the mental alertness etc to make them aware of it.
The therapist also gave me an activity diary to fill out in the meantime, to help me identify where I'm overdoing things and hopefully discover more of a baseline on my own. I'm filling it out and it is helping me identify where I overdo it more obviously than when I was depending on my rather rubbbish memory! But it is also slightly depressing as evidently it appears I'm doing too much most days. I'm working on reducing it now I've recognised that though!
In other news my wheelchair broke in mid-May, two days before my best friends wedding where I would need it to carry out my role as one of the bridesmaids! So we had a bit of a panic there, thankfully I managed to borrow one from the British Red Cross which saw me through that day and for a few weeks beyond until I could pick up a secondhand one to keep me going for now. I cannot explain my gratitude for the British Red Cross loan service though, without that I don't know how I would have managed the wedding.
I've now got a little secondhand one which is actually more comfortable than my original wheelchair, mainly because it is more suited to the size of me! That was more due to luck than anything else. And I am awaiting news of my referral to wheelchair services to hopefully get a more suitable wheelchair for the longterm, seeing as I am dependent on it to get out of the house these days.
I have also been referred to Kings College Hospital in London for investigations into the cause of my dizziness and fainting spells. And so in August my parents and I will be making the trip up to London on the train with me in my wheelchair - quite a nervewracking thought! I've never used the trains since being dependent on a wheelchair to get out; mainly because I'm not really well enough to travel that far. But needs must, and whoever I see at the hospital will just have to see a totally exhausted me, and I will have to endure the week or so of payback from the trip.
So I think that is all that's been going on, when written down it doesn't sound a whole lot, but the impact of all of these appointments, the wedding and the trip to get the new wheelchair (to check it was suitable before buying) have all resulted in days of payback meaning little else has been possible except for the basics of washing, dressing and eating each day.
I'm hoping that while I'm waiting for these appointments I will be able to return to doing some bits and bobs I enjoy, such as blogging a little more often, knitting, card making and perhaps even make a bit more progress towards finishing decorating my room so I can actually unpack the boxes of stuff piled around the place. Doing a little each day and buidling from there.
Bye for now,
Sunday, 13 May 2018
I can't believe today marks 13 years since I got diagnosed. Yes it is May 13th and my 13th ME-versary! A day of mixed emotions remembering the feeling of relief that day 13 years ago at finally getting a diagnosis, of someone saying they know what's wrong. Then as the years have passed I've realised that actually no one truly knows what is wrong with me; if they did there'd be more support, a treatment and maybe even a cure.
On that front everything this year seems to be going at a fast pace, not just in terms of how fast the year is going (how is it May already?!) but also my referral to the CFS Clinic, made at the beginning of March & first appointment was the end of April! Super speedy. And now I have a further two appointments already made. This is the first form of support I've had, other than a GP, in 9 years.
The first CFS Clinic appointment went well & gave me cause to be optimistic; they actually listened to me! Since having a diagnosis of ME so many doctors have just brushed aside my concerns about new symptoms as 'just being ME’ and left me to manage things on my own. I've lost count of the number of times I've left a doctor's office on the verge of tears, despondent at the lack of support. I know there's not much they can do for ME, but a bit of support goes a long way. This was the first time in a long while I left the office of a medical professional feeling optimistic.
I've had to have another blood test, in addition to the one I had back in March. This time I didn't faint mid-test though, my body waited until afterwards! Maybe that's progress!
I don't know if any of this will lead to anything, but right now knowing there's someone there who will listen to me at these appointments and offer support is help enough. It's hard to explain but having had almost nothing in the way of support (medically) for the past nine years, virtually anything the clinic offers is better than what I've previously had - the starting bar is already mightily low.
It's also come at a time when my health has deteriorated, this blog post has taken me days to write because I can't type, or even think clearly enough to put a sentence together for very long. It's been written literally a paragraph at a time over almost two weeks. My legs frequently feel like they're going to give way beneath me, and my arms aren't much better when I try holding onto things for support. The pain levels have increased, as has sensitivity to noise and light - ear plugs & sunglasses are my best friends! I can't manage much activity each day and require help with simple tasks again. It's taking time to get used to, to adjust to a further reduced level of independence.
I'm not expecting a miracle treatment or cure but having some support is wonderful! Here's hoping this time next year, maybe, just perhaps, things might be a little easier than they are right now.
But this anniversary isn't all about focusing on the continued lack of understanding, support and treatment, it is also about celebrating the person I've become as a result of having this illness. Through the years I have found I am stronger and braver than I ever thought possible, I have survived bouts of such poor health looking back I'm amazed at how positive I managed to remain. That's not to say I don't have my moments of feeling sad & frustrated about all that I've missed out on, am unable to do and how uncertain my future looks. But for the most part I remain positive and try to achieve things despite the limitations this illness imposes. The biggest of those during the last 13 years has been my degree; possibly the most challenging thing I've taken on in life if you don't include the challenge that being chronically ill presents!
So today there shall be cake & smiles even though I've been ill 13 years and it seems I'm no closer to recovering. I will make the most of what I can do and enjoy that.
Besides my wonderful friend over at the-slowlane-me is hosting a Blue Sunday tea party, and so cake is definitely a must, I may not be able to join in personally but I'm there virtually! If you want to support her in raising money for the ME Association then please join in, details can be found here: https://twitter.com/theslowlane_ME/status/995576623310213120?s=09
Saturday, 12 May 2018
It's that time of the year again: ME Awareness Day. I haven't managed half of the awareness raising things I usually do; I've been having to take it easy following a lot of appointments & there's more coming up.
As has become tradition I'm writing about a day in my life with ME, describing how I am and what I can do on an average day.
So here goes….
“I wake around 8:15am and lie there slowly moving my joints, stretching, assessing the pain levels. I slowly attempt to push myself up into a sitting position; this often takes a few attempts as my arms collapse under me as I try and push myself up. Once in a sitting position I move my legs round so I'm sitting on the edge of my bed and there I stay for a few minutes while my body adjusts to being upright. If I attempt to stand too quickly I get very dizzy & feel faint. I make my way to the stairs, usually leaning on the door frames and walls on the way, before beginning the slow trek down the stairs, often on my bottom; bum shuffling as it feels safer than trying to walk down them.
Once downstairs I use the bathroom before sitting on the sofa, propped up on pillows with my feet up, resting for at least 15 minutes before attempting to get my breakfast. I get breakfast while sitting on a perching stool, having assistance with lifting and opening bottles of squash and milk etc. Before returning to the sofa, with my breakfast, usually carried by one of my parents, where I eat it before taking my pills.
I rest for a while after breakfast before climbing the stairs very slowly to get some clothes; I sit on the edge of my bed getting my clothes out of my wardrobe and chest of drawers (the perks of having a tiny bedroom!) before slowly making my way down the stairs again.
I have another short rest before I head to the bathroom to get dressed, I sit on the top of the closed toilet seat to do this and either use a helping hand or have one of my parents help me with dressing my bottom half. Whatever happens socks get left until I'm back on the sofa!
I have another short rest, then it's usually half past ten, if not eleven o’clock - boy does time fly by when you have to do things slowly, punctuated by resting! - so I make a start on doing something, usually replying to a message from a friend, knitting or catching up on a TV show I've missed. Whatever it is, my concentration vanishes after 20 minutes and I can't knit for long because it hurts both my arms and hands.
Another rest follows, before lunch. This is often made for me by one of my parents now, and brought to me to eat on the sofa. It takes me a while to eat and I require yet another rest afterwards as even just eating & digesting food takes energy.
The afternoons are often spent outside on my garden sofa in the dry warmer weather, laying there with my sunglasses on (and earplugs in if it is noisy), on colder or wetter days it's the sofa inside that has the pleasure of me laying on it! I might read if it's quiet, watch a little TV or just lay there quietly chatting to my family.
I have another rest mid-afternoon, before I get one of my parents to help me into my pyjamas. Then I curl up in a comfy chair (feet up) and watch my Dad cook dinner, often chatting to him as he does so.
I return to the sofa where dinner is served to me on a lap tray - since spilling my dinner all over both myself and the sofa a few weeks ago I am no longer allowed to hold a full plate!
After dinner I often just lay on the sofa listening to the conversation going on around me. Depending on how fatigued I am, I might well be wearing my sunglasses and possibly even have an ear plug in order to cope with that.
Come 10pm I head to the bathroom to get ready for bed, my legs often trembling underneath me as I do so. I have to sit down to do my teeth before making my way back to the living room where I take my final lot of painkillers of the day. My Dad helps me get up the stairs, ready to support me if my legs do decide to completely give way underneath me. It's an incredibly slow trek as by this time my legs are shaking constantly under my weight.
I get into bed, write in my journal, turn down the light & wait for sleep to claim me; by some miracle that is usually by 11pm! “
As with previous years post this is just an average day. Some days are worse, some are better. I adjust my activity levels and the aids I use accordingly. But this is the amount of activity I think I can handle with no negative effects on my health. Anything more and I pay the next day. (a recent deterioration means I'm not 100% sure this is accurate right now - it might be slightly less activity to have no negative effects).
Looking back on last year's post it's disappointing to see things have deteriorated again and things are that bit more difficult again. I did know things had become worse of late but I hadn't realised just how drastically things had changed in the past year. Life goes on though & I remain positive.
Some things haven't changed since last time though, so I shall quote from my post back then:
"...when people visit I always put on a brave face, an act so they don't see just how bad the ME is. I don't do this for my sake, but to protect them from the truth. There are some who see the 'real' me now but it's taken a few years for me to 'drop the act' for them. And if they themselves are having troubles or stresses the 'act' of being better than I am and not letting on how bad I really am comes back to protect them. I don't want to add to their worries."