Smiling Clare

I have to admit I’m usually a fairly festive person, I love everything about Christmas; the carol services at church, the kindness shown by all, spending time with friends and family, decorating the tree, even the gift buying.

Usually.

This year despite the bright face I’ve been putting on I’m finding it hard to really get into the spirit of Christmas. I don’t know why. Whether it’s because even in the weeks leading up to Christmas it’s all been about medical appointments and managing them alongside festive preparations. Or just that I seem to have so much more to do this year. Or maybe it’s just because I’m still recovering from a virus. Any of those things is possible. Or it could be a combination of them all.

The truth of it is I’m not really looking forward to Christmas. Not in the way I have done other years. This year I’m going to have to use my wheelchair for part of the festivities over the Christmas period, well more of them than I have done other years. I’ve grown used to using my wheelchair when out and about places, but not when visiting other people’s homes. But there is now a walk from where the car is parked to a family member’s home which is unmanageable for me so I will have to use my wheelchair for that. And it feels like a big deal, almost like a step backwards, even though deep down I know it’s not a step backwards, it’s just recognising something which is too much for my body to handle, and finding a way to do it anyway.

I’ve accepted my wheelchair in so many ways, but needing it quite as much as this is a new thing. And as such takes some getting used to.

I am also desperate to get to the Carol Service at my local church this year, but as I write this I am recovering from a virus that has completely floored me. I’ve had to cut back on everything in order not to overdo things. I’m only doing half of the physiotherapy I had been managing fine, I’m having to factor in more rest breaks, and longer ones at that.

The carol service falls 3 days before Christmas Day.

It will be busy. It will be loud. And that’s without the inevitable tea & chat afterwards. I don’t know if or how my body will cope with it. But I didn’t manage to go last year, and it’s an important part of Christmas for me. Christmas without going to a church service of some kind just doesn’t feel right, after all it’s where the meaning of Christmas is.

Do I risk going and being really unwell for the busy days that are Christmas and Boxing Day? Or even worse finding myself falling more unwell while there and forcing someone to leave early with me? Or do I just decide that yet again I’m not well enough to do what I class as an important part of celebrating Christmas?

I really don’t know what to do. Christmas doesn’t feel like Christmas without going to church. Not to me anyway. But just managing Christmas with family and friends feels like it’s going to take an awful lot out of me, and I don’t know if I have enough in me to manage that without negatively impacting my health. Going to church as well might be too much, but should I do it anyway because it’s important to me?

I should be used to making decisions like this by now. I mean I’ve been having to make decisions like this since 2005. Surely by now it shouldn’t be as difficult as this? Surely it shouldn’t tear me up so much to choose managing my health over whatever it is I was hoping to do? But the truth is it doesn’t seem to be getting any easier. Not for me anyway.

So I’d like to wish everyone with chronic illness, no matter how mild or severe, the best of luck for surviving the festive period. For making those difficult decisions about the important events to you, and managing your health. I know how difficult it can be, and I’ll be thinking of every one of you during this busy time of year.

Well I had my third physiotherapy appointment a couple of weeks ago, and things are still going really well. Even in just a month of doing the gentle exercises, mostly laying down, I have seen some little improvements in my ability to climb the stairs each day.

It’s nothing drastic, but lifting my foot up high enough to reach the next step has become that little bit easier. And most of the time I’m a tiny bit steadier on my feet while climbing them too.

This may not sound like a big deal, but it makes the task of getting up to bed each night that little bit less challenging. It’s often still like climbing a mountain, but perhaps that mountain is becoming more scale-able.

So at my physio appointment we ran through whether I had been managing the exercises suggested, and how frequently/how many reps of each I’d been doing, before going through them one by one to make sure I was doing them correctly. (Turns out I was doing one of them slightly wrong, so it’s just as well we did that! My memory isn’t the greatest, so it didn’t come as a surprise that I’d done that)

We discussed adding in an additional exercise once a day, which we agreed would be manageable. Along with increasing some of the easier exercises to twice a day instead of once, by easier I mean the ones my muscles clearly weren’t struggling with, unlike others which when I complete my muscles still shake with weakness.

It was also suggested I slowly start increasing the number of reps I do of the exercises by 1 rep, working towards doing 5 reps of each. But this can be done as slowly as required; increasing by 1 rep, on one exercise done once a day, doing it for a week or so and then trying another increase in a similar manner.

The most important part about that is if it proved to be too much I should drop it back to what I was managing, and continue in that way until I felt it was time to try again. Because there is no point in pushing, it will likely do more harm than good.

So all in all another great appointment. I go back again in a month, and we will see what progress has been made, whether I’ll have been able to increase the number of reps of some exercises, and by how much. But I don’t feel under pressure to have managed it, and I think that is possibly the most important part about this process; if it isn’t manageable we will review things, it won’t be seen as a failure on my part, or as me not trying hard enough. And that makes all the difference.

Now I know physiotherapy can be a controversial subject in the world of M.E. I also know the damage that can be done from following a Graded Exercise Therapy regime which isn’t graded gently enough to be manageable. And that is why it was with some trepidation that I accepted a referral for physiotherapy after my diagnosis with joint hypermobility syndrome.

I have always recognised the importance of keeping my muscles working as much as I can safely do, without causing other symptoms to flare and my condition to worsen. But equally I have always struggled to find suitable exercises that are manageable for me.

Now that is a thing of the past. I was referred to a lovely physiotherapist who, although admitted she didn’t have a lot of knowledge about PoTS, M.E. or hypermobility, she knows a little about them all and is willing learn. Taking everything into account, our first appointment was mainly spent discussing my history, and coming up with a few things I could do differently each day.

So for example, I was already stretching, rotating my ankles, and completing knee extensions twice a day as per my Occupational Therapist’s recommendation at CFS Clinic (who didn’t really know what to advise me to do for the best). In addition to this we added in “armchair marching” whereby I sit and essentially march while seated; lifting each foot off the floor and putting it back down as if I was walking. And finally we also added “crab-walking” through the kitchen each time I went through there; so instead of walking normally through the kitchen, I walk sideways, thus using different muscles, and strengthening them.

Because all of this took a while, and she could tell I was beginning to flag, we didn’t do the usual physical exam as part of that first appointment, instead that would be done in my second appointment.

By this point I could already tell I’d struck gold with seeing this particular physiotherapist – she already understood I had my limits, and that this would need to be a gentle approach if I was to be able to manage it.

The second appointment didn’t disappoint on that score either. After a gentle physical exam, which proved my lower back and hips are one of my more weaker points, she came up with a plan which involved an additional six exercises for me to try and do each day, four of which are done lying flat, one sitting and one standing. The number of reps for each of them varies from 1 through to 5, depending on how I managed them when she talked me through them that day. And some are recommended to be done twice a day, while others only once.

She suggested I start by doing them all only once a day to see how it went, and then try doing the one’s recommended twice a day to see if it would be manageable. There is also one particular exercise with which she has noted the number of reps as “1 or 2 as able”, meaning if I struggle with doing just one, I only need to do one, as she could see my muscles were shaking as I completed it under her guidance.

And she also made the point that there is no point in pushing myself to do it if I’m not well enough, or if it proves too much, as it won’t make me any better and will do more harm than good. If I can’t manage it one day, it doesn’t matter, as long as I go back to it as soon as I am able. If I need to reduce the number of reps I do because it’s taking too much out of me, again it doesn’t matter. We’ll revise the plan at my next appointment.

As it happens I am actually managing all of the exercises quite well, exactly as she suggested them. The fact that they are all gentle, and I think also that many of them are done lying down or sitting, all helps make it possible. I haven’t really had to reduce the rest of my days activities (which isn’t a whole lot), and I’ve been managing to do them even on days where I’ve had other hospital appointments.

I know this is going to be a slow process. Rebuilding muscle strength will take time, but it should be beneficial too. It’s only been a month and already I am seeing small benefits; it’s getting that little bit easier to lift my foot up each step of the steep stairs in our little house, something which has been a struggle for many years now.

I’m hoping that this positive experience continues as the months go on, it certainly seems to be making a difference already and I can only hope that it will continue.