a little update

I’ve not written in a while as I’ve been getting on with the serious business of going on holiday. So now I’ve been home for a week or two recovering I feel it’s time for a little update!

Firstly, I’ve been but in the support group for my ESA, which for those who don’t know, is A GOOD THING because it means I get my benefit payments for 6 months before being reassessed. Hopefully by that time things will be a little clearer in terms of where/when I’ll be back at work. It should at least tide me over till Christmas.

Secondly, I’m able to manage over 15 mins on the exercise bike every day which feels like such an amazing achievement! I know I shouldn’t get ahead of myself but I’m really desperate to start running again and I’m hoping it won’t be too long!

Overall I feel I’m slowly improving but I still have major dips symptom wise. I have the odd occasional day where I feel almost normal again but usually the next couple of days I pay for it! This happened in the first week of our family holiday to Scotland, where things got so bad I had to spend 4 days in bed which was unbelievably frustrating. Thankfully by the second week I was much better than I ever expected and even managed some sort walks. Intriguingly I was by the sea, and I always seem to notice a slight improvement when I’m on the coast although it could just be a co-incidence!

I had a 24 blood pressure monitor on last week, only 10 months after it was first suggested….. I’m waiting to find out the results of that but hopefully everything will be normal as I didn’t have any major symptoms that day!

Other than that I’m just taking life slowly; visiting the odd cafe, crocheting, drinking gallons of water and enjoying the sun while it’s out.

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phew!

Despite my body kindly reminding me on a minute by minute basis that I do in fact have PoTS, it’s been a good week, so here’s my favourite view of Sheffield (from Meersbrook park if you’re interested).

Drumroll please ……… after over a months break I’ve finally got back on the exercise bike!!! This is partly because after struggling on for a while I finally rang the specialist nurses who let me increase my second dose of the day of Ivabradine, which has so far helped give me a bit of a boost. I’m hoping eventually they’ll let me try some other combinations of medications as I’m a long long way off feeling vaguely ‘normal’, whatever that ends up being. For now, though, I managed 5 whole minutes on the bike. Those 5 minutes where the hardest minutes of exercise I’ve ever done (yes, even including cross country in year 9, or the dreaded bleep test in PE). I was on such a high afterwards I may as well have run a marathon.

I’ve been to my first PoTS support group meeting and it was lovely to meet other people with PoTS who understand what you are going through, and what a mad mad thing PoTS really is.

Without a doubt, the best thing that happened this week was when I went in to my GP for yet another sick note. We’ve had a system where I ring up the receptionist who then lets a GP know that I need a new note. So I haven’t actually been in contact with a GP since before my actual diagnosis and I thought I’d go in to see them in person for this one. Best decision I could have made! Before I’d even sat down in the consulting room this lovely GP who I’d never seen before was saying what I tough time I must have had lately and asking how I really was. Those ten minutes were probably the best GP appointment I’ve ever had even though I only needed a sick note. We talked about my diagnosis journey and how uncontrolled my symptoms where, how long it might take to recover enough to regain a decent quality of life, what my career options might be, how I was mentally coping, if my family were supportive, what my manager was doing to help me regarding work…. I could go on! I’d like to add that he didn’t claim to know much about PoTS, but he had at least heard of it and knew enough to know how dehabilitating it can be.

I came out feeling quite emotional, it made me realise how damaging it was to have had bad experiences in the past because it made me feel that it was a constant battle to be believed by health professionals. My whole past experience means I can doubt myself or not want to bother GPs or even the PoTS specialists that I’m under as I worry about the reaction I might get. A tiny irrational part of me worries before each appointment that I will have a repeat of the past and be told I’m just an anxious young adult with nothing wrong. Which is silly I know but I think it is a natural reaction to have. It’s hard to undo the 10+ years of being told nothing is wrong when you know deep down something is in fact very wrong.

In other news, I’m waiting for the outcome of my work capability assessment questionnaire and after many phone calls and confusing letters my oh-so-generous Employment Support Allowance payments have begun. Let me put it this way, I’m really grateful for once that it’s my parents I owe rent to!

The hot weather recently has been tough, tougher than I imagined, so I’m enjoying the torrential rain and downpours at the moment. Also, more often than not I’ve been waking up feeling as if I’ve been hit by a bus. I’m sure it would be much more painful to actually be hit by a bus, but it’s the only way I can think to describe it. Everything aches so it’s taking superhuman effort to get up, but most days I manage! I feel so relieved I’ve made it through the last week or so and am still smiling and (relatively) sane*.

*to be fair that is debatable!!!