Smiling Clare

Living Life Within the Limits of Chronic Illness

Author: Clare Page 1 of 51

Physiotherapy Continues

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.

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Physiotherapy

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.

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In Limbo

That’s how life feels for me at the moment. I mean there have been times since 2005 I’ve felt like I’ve been living life in limbo; trying to work towards qualifications for a life that may not materialise, it all depended on how my health was in the future. And now, having finished my degree back in 2017 it feels like my chances of putting those skills and the knowledge I gained from it, to work in some kind of paid employment is a long way off.

As I lie here typing this I am awaiting letters from two different hospitals for appointments which will hopefully prove useful. I have an appointment with the dietitian next week, to see if the changes I’ve made to my diet since I last saw them has made any difference to my low salt levels.

I’ve been doing the gentle physiotherapy exercises I’ve been given, once a day and have just started increasing them to the level the physiotherapist suggested; she wanted me to start off doing them once a day just to make sure there was no ill effects, before upping it to doing some of them twice a day as she would usually recommend. And so that is what I have done. And so far so good.

But it feels like the rest of my life is in limbo, I can’t plan anything much because whenever I do I receive a hospital appointment for that day or the day that follows and either the plans have to be cancelled or pacing has to go out of the window and I suffer greatly as a result. I don’t feel like I can delay the hospital appointments as usually there has been quite a wait for them anyway, and also I need those appointments if I am to get any answers as to what’s going on in this dear little body of mine.

I am so grateful that one referral for my dizzy spells and tendency to faint has snowballed into so many different things being investigated, and potentially more diagnoses, but I have to admit it is scary. To think that some of these things have been ignored since I first started showing signs of illness back in 2005 is frightening. It brings up questions of whether things could have been different if they’d been picked up back then, should I have been pushing more for support and answers? Questions which can’t really be answered.

I know not all of these things necessarily date back that far. The latest referral has come about as a result of some persistently abnormal blood results, something which is unusual for me, as like most people with an M.E. diagnosis my blood results have previously always come back normal. So we wait and see what will come from this referral, I have a strong suspicion it will mean more blood tests and needles, which if you’re a regular reader of this blog, you’ll know I faint on sight of needles, and often during or after a blood test even without seeing the needle. I’ve only managed not to faint once, in all the blood tests I’ve had over the years. So you can guess how much (or how little) I’m looking forward to that particular appointment! Don’t get me wrong, if it gets me some answers it’ll be worth it, I’m just not particularly looking forward to that one coming through.

Whatever happens I suspect it’s going to be a fairly slow process; I know rebuilding my muscles through physiotherapy will be a very slow process, and that doesn’t surprise me, I am just grateful I have a physiotherapist who is understanding of ALL the conditions I’ve been diagnosed with, or am suspected of having, and is building a plan around them all. As for the rest of it, well I’ve come a long way from that first cardiology appointment back in May for suspected Postural Tachycardia Syndrome (PoTS), although I may not be any closer to getting that diagnosis in one sense (I’m still awaiting test results and news on that front), I am now under the care of so many different hospital departments, even different hospitals actually, that although progress on the diagnostic front may be slow, the support to find ways to improve the quality of my life is there. If they find things which are treatable, I have faith they will be treated, but in the meantime everything is being done to help keep my health at the level it is and hopefully find some way of improving my quality of life. Yes it’s going to take dedication and hard work from me, but it will be worth it.

So while I’m in limbo and I am unable to put the skills and knowledge from my degree to use in paid employment, I have a much more important task on my hands. You see to keep track of referrals to and appointments from around 6 different departments, spanning 5 different hospitals, while managing to pace myself around those appointments and do my physiotherapy exercises is a challenging job in itself, that’s without any additional stress that life throws my way. And in the end I will hopefully get the biggest reward I could hope for; better health, or failing that at least the knowledge I need to be able to live the best possible life with my health the way it is. I’m ever hopeful that the outcome will be the former though!

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Adventures in “Frog”

Adventures out anywhere but hospitals are a rather unusual occurrence right now, as most of my energy is taken up simply by attending those appointments. However during a week, free of appointments, at the beginning of September, my parents, sister and I managed to get away to the nearby coast. And although the holiday itself wasn’t the most relaxing (Actually that’s putting it mildly!), we did manage some trips out where I could begin to get to grips with using “Frog” my wheelchair with Alber E-Fix power assist.

Slim woman in a green framed wheelchair, wearing bright blue trousers, a pink top and black hooded jacket, holding a camera up to her face taking a photograph

Caught taking a photograph whilst out for the day in “Frog”

I learned a lot about “Frog” and the Alber E-Fix during the little trips out I managed with my family. The biggest thing of all was that even a seemingly small trip, takes more energy when I’m the one in control of where I’m going, especially when I’m still getting to grips with the controls; just how sensitive is the joystick control to turn a corner? Is there enough of a gap for me to get through? Honestly navigating tight spaces when you’re still getting to grips with how sensitive the joystick control is, is no mean feat! This is one aspect I’m sure will improve over time, as I use it more, it should become second nature; like learning any new skill.

It is incredibly freeing (and stressful!) being in control of where I’m going again, after at least 7 continuous years of being dependent on someone pushing my wheelchair so I can get about when out of the house. On these trips out I ended up doing more shopping than I have in years, because I could decide which parts of the shop I wanted to take a closer look at, which previously I wouldn’t have bothered asking to get closer to because I always felt like it made me a nuisance.

I was surprised by the number of shops I could actually get in as well; the instructions for the Alber E-Fix state it can manage obstacles up to 4cm high. Now I’m no expert at judging height, but I’d say I definitely put that to the test, with my parents encouragement! There was a charity shop I wanted to go into (because who doesn’t love a good charity shop?!) but which had a slight step, in hindsight probably close to 4cm high, into it. I wasn’t sure “Frog” would manage to get over it, however I was encouraged to give it a try with my Dad standing behind me, ready to assist if necessary.

Well….this is where we discovered that “Frog” is an apt name for my wheelchair, as I approached the step with the two front wheels, once touching the step there was, what I can only describe as a burst of power from the rear powered wheels, and up the step “Frog” hopped! Or at least that is how it felt to me. As soon as it was over the obstacle the power dropped back down to what it had been before going over the step. And getting out was just as easy (although without the need for the burst of power as there was no obstacle to get up!).

The back of a light brown haired woman, sat in a wheelchair, looking out toward a flowerbed and house in the distance which is in the background of the image

One of the adventures in “Frog”

Now I learned one other thing about “Frog” on one of these trips out; how ‘easy’ it is to do a wheelie when going up over a bridge. And as such, how grateful I am for the anti-tips that are fitted to “Frog”! You see ladies and gents, I had been over this bridge in the opposite direction, not 10 minutes before without any trouble at all. However, it turns out one side of the bridge is actually steeper than the other, and so on my return journey over it, as I innocently started wheeling myself up it, “Frog” tipped backwards onto the anti-tips, giving me the scare of my life! It soon righted itself, thank goodness, (although it took my heart rate a while longer to settle!) and has become one of those funny stories for all to enjoy.

It’s nice to know the anti-tips work, but I hadn’t exactly been intending on making use of them, especially not quite so soon after getting “Frog”, I mean this was the longest adventure I’d had out in it and as I say, I was still getting to grips with the controls and navigating where I was going.

On all these trips out with family, I left them to lead me. I am yet to feel confident enough in using “Frog” to be the one leading the way. I look to them to check it’s safe to cross the road; it’s been 9 years since I had to do that for myself. (That’s not to say I haven’t paid attention when being pushed in a wheelchair, but it just hasn’t been my responsibility). I think it will be a while before I feel confident to even attempt venturing out in it on my own, I’m going to want someone there as a safety net for a little while yet. But I suppose after 9 years being dependent on someone else to get you places, that is only natural.

However that week in September, despite not being the most relaxing, provided me with opportunities to take “Frog” out on a few little outings and begin to get to grips with being a little bit more independent! Which while being completely, utterly exhausting, (honestly I can usually manage an hour out in my wheelchair now, somewhere quiet, with “only” requiring a few hours rest afterwards to prevent a significantly worsening of symptoms, with “Frog” I needed the rest of the day to rest!) It was also the most freeing and exciting thing to happen for some time! So here’s to “Frog” and having many more adventures!

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