CFS Clinic Update

So my last CFS Clinic appointment was all the way back in July/August time. That last appointment left me with a fees things written down to follow up on; few goals to steadily work on, which included trying to do a little walk a couple times each week, to drive more & progress my photography, as it's the hobby I still have. Also added to my planning/goal sheet was a trip across the pond to aim for & look forward to the following year (this year). Before I left, I was told I would receive a follow up call in November to see how I was getting on with things.

Well November came & went with no phone call. Finally I received a letter telling me I had an appointment on the 25th of January, I got this letter only a day or two before the actual appointment & it was quite a surprise since I'd not heard anything from them for a while. So the date came, I hopped (well not literally of course!) into my car & drove to my appointment.

So the appointment started with a "so how have you been doing?" My reply to this was to tell her that I'd had a major setback in September/October due to visitors & a wedding, worsened by the numerous flu's & viruses I'd picked up along the way. She said she hoped everything I did before hand was worth it & I just automatically said yes, though really, (because of how that time makes me feel right now) I don't believe all of it was.

I told her how I was trying to plan & pace more again to get myself back on track & work my way back to where I was before the crash. She said that was good & building myself back up steadily should help.

We then moved on to the list of things I was planning & working on;

  • Set/timed walking - Went out the window when the setback came through the door! Though I have been managing to do other little outings, just nothing structured.
  • Trip to America - Dates set, tickets booked. However, that went out the window due to my relationship ending 2 months ago.

At this point I wasn't feeling all that great about this appointment to say the least. I'd already felt I'd failed in my progress, even though deep down I know the walking had to stop due to the setback & I can't help my relationship ending & my trip being cancelled. We then moved on to the other things on my list;

  • Driving - Was doing a bit more before the crash but that has since been scaled back down again, though she was pleased I'd driven to the appointment. Which was actually a big deal for me!
  • Photography - Now this at least I could say I was doing good with! Mainly because even if I don't have the energy to get out with my camera, I can still take photos either of my cats, random things around the house or have a little venture into the garden.

Macro shot of Heather in the Garden

Another good thing, well what I thought was a good thing, is that even though my America trip is cancelled, I've made plans to still go away at the time I should have been there (this is pre-planning for my emotional state more than anything, as I know I'll need distracting from thoughts of where I should have been). I didn't give her all the personal details, (don't share much personally with this specialist really) just that I was going away for a weekend. Now, I'm really excited for this trip as I'm going to be attending The Photography Show in Birmingham! I know the realities are that it'll take a lot out of me, but the way I'm feeling right at this moment, this trip is more worth it than what stuck me in my last setback in September!

Of course I have my worries, what chronically ill person doesn't when going away? However, I explained that I have plans in place & will be pacing myself & that the days aren't long ones. My hotel is a very short walk from the arena, I know the area & the arena well as I use to make yearly visits to a Horse show held at the same place. I'm travelling the day before & travelling back the day after, so I've got rest days. I've even made plans to ensure that I'll be sitting down for a few hours each day during the actual show as I'm attending a few talks/masterclasses.

My specialist certainly had other ideas about my trip & put quite a downer on it. Some of the things she suggested were well meaning but overall I was getting the sense that she thought my going away was a bad idea. I felt a little like my ability to cope with the trip & whether is was actually worth any setback was in doubt. Even though she's encouraged me to do things that I enjoy doing, (right now only really anything photography related seems to be it) she didn't seem to think it was. This left me again not feeling so happy with how the appointment was going.

Thankfully after this, the appointment was coming to a close. We then reviewed the main points of the information I'd been given & some more relaxation tips & where to find some gentle exercises & stretches for when I feel ready to include them in my day. She again said that apart from the setback, she was happy with what I was trying to do. She also, randomly, she said that she loved my Tartan scarf; apparently it was Burns Night & asked if I'd worn it for that! I hadn't.

 Before I left, another appointment was arranged for in a couple of months. From what I can gather, that one will be my final one. I'm apparently not being discharged, I'll still be on the clinics book's, I just won't be having regular appointments but if I feel I need any help, I can call them. So basically, from April, I'm going to be left to simply work on the goals & things I've got in place. I've got my file full of information & things to hopefully help when I'm struggling, I just need to use them.

CFS Clinic Booklets

So this appointment didn't go as well as I'd hoped & I left not feeling so great. This was partially due to the fact I'm not in the best place personally with a few things (also being the highly sensitive person I am) so I'm taking things a little more to heart than I normally would. But overall, there's been a number of positives throughout my earlier appointments, so don't let this put you off from pushing for a CFS Clinic referral as it has been very beneficial in many ways, learning to plan & pace is one of them.  So I'm very grateful to have the opportunity to actually be taken on by the Clinic as not all people with M.E are.

For more on that, check out my previous post; Planning & Pacing: The Process

So I guess, I'll just see how things go at my final appointment & take working their program from there. After that, I'll write a post on my overall experience with my CFS Clinic, which will be in April, so keep an eye out for that if you're interested.

But for now, I'll keep on doing what I can, planning, pacing, listening to my body & resting when I need to & doing things when I'm able. I'm slowly beginning to stabilise, so I know I'm getting there & the setback is on its way out.

I hope you're all as well as can be & are taking care,

L x