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!!!

lambs, lakes and laughter

I’ve just come back from a weekend away in the lakes with some lovely friends from uni. I was a bit apprehensive of how I would manage, and was also worried about having PoTS symptoms around people who know me from when I was well. I’m used to the reaction from people that because I don’t look ill, I must be fine.

I needn’t have worried  because I couldn’t have asked for a better group of people to spend time with. They let me go at my own pace, have lots of naps, cooked and took me out in my wheelchair for which I was so grateful.

We were staying on a working farm and there were two very cute hand reared lambs in the field next to us, as well as free range chickens who seemed very keen on trying to break into the house whenever the door was open. I was proud of myself as on the first day I managed a short walk (we took my trangia and made a brew half way round for a cheeky break!). The next day we went for the day to Conistion Water but I wasn’t leaving the wheelchair behind for that! We were really lucky with the weather too, with blue skies and gorgeous sunshine.


In terms of how my PoTS was on holiday, I had all the usual brain fog, headaches, nausea, aches and pains and dizziness. I felt extremely fatigued and had to have naps where I was flat out comatose on the sofa for hours at a time. I found the third and fourth doses of ivabradine didn’t even touch me with horrendous palpitations throughout the afternoons and evenings. I could barely stand and felt really bad that I was unable to cook or wash up or generally be useful because I’m one of those people who like to get stuck in and help out. I do feel very lucky though that I was well enough to be able to go and very appreciative of my amazing friends. Love you all!!

The exercise bike will have to wait yet again whilst I recover, especially in this heat. When I arrived home I was so tired I could barely speak, and I slept for two days. Now I’m dragging myself out of that hole and managed to go for a gentle swim in our local lido today with my cousin. The heart palpitations are back with a vengeance! It was so worth it though because mothing can compare with spending time with good friends. I needed the change of scenery and some time away independent of my family (lovely though they are!).

summer is here!

It’s been a while since my last blog post, mainly because there’s not that much to say. I’ve spent a long while sleeping, I’ve seen various relatives and friends. I’ve done a bit of gardening, crocheting and political campaigning but not had much luck with the exercise  bike! We’ve decided to have a bit of a rest from each other but I’m hoping to start again soon.

At the moment fatigue is definitely the worst symptom I have, with brain fog a close second. I’ve just not had the energy to do more than is necessary, and I’ve found it really hard to balance what needs to be done with what I want to do, because at the moment I just want to do everything and am finding it hard to say no! I really miss things like getting out into the countryside for long walks, especially now the weather is (supposedly!) warming up. I’m lucky to have a corner of the garden which is shady and cool, so when I feel able to go outside it’s a lovely little corner to read in even on hot days.

When I have good moments I try to take advantage of them and I plough on regardless. This leaves me unable to do much for days afterwards as I’m paying the price for my over-enthusiasm! I’m still learning my limits and getting used to being on medication, and have found myself worrying about going back to work. This is because I had hoped by now that going back to work would be a realistic goal in the near future. However the reality is that it’s going to take me a little while longer yet. I seemed to have reached a bit of a plateau in my recovery, as although I’m not getting any worse, I’m also not getting any better, making my goal of getting back to work feel like even more of a distant prospect.

This is a scary thought especially as it’s such an ‘unknown’. When will I be able to work again? Will I be able to carry on with my job? Will there be anything suitable for me to do if I have to be re-deployed elsewhere? So many questions which for the time being I’m trying to put to one side and focus on getting better and remembering to have a bit of fun too while I’m at it!