Smiling Clare

Living Life Within the Limits of Chronic Illness

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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2 Comments

  1. I’m glad you have such an interested group of doctors looking into things for you. Although I can imagine how exhausting that must be too. LOL… I am quite afraid of needles too – I get quite worked up and my veins hide, I tend to lose control of my limbs since falling ill with ME and I have fainted one time. Not fun, but necessary. I hope it goes well for you.

    • Clare

      Thank you. They don’t usually have a problem finding my veins now, but I either faint while they’re still doing the test, or promptly as soon as they’ve finished LOL

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