Can’t believe its been over a month since my last post and so much has happened in that time!
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,