looking through rose tinted spectacles

Nearly a month since my last post and I’m still running and cycling on the exercise bike! I almost can’t believe it but I can honestly say the only symptoms I have at the moment are brain fog and fatigue, which can both be severe at times but it’s a massive improvement and more than I could have hoped for a couple of months ago. My episodes of pre-syncope are very rare and usually only happen if I’m late taking my medication or get up out of bed too suddenly.

I made it to Wales for the weekend to visit a friend and apart from a few necessary naps felt pretty normal. We visited beaches and pubs and it was lovely to explore somewhere I’d never been before.

The long train journey home took it out of me especially when the person sat in my reserved seat wouldn’t let me sit down but thankfully the guard found me an alternative. Frustratingly that extra 5 minutes stood up trying to reason about my seat really exhausted me and made me feel really ill for the rest of my journey; I could barely stand by the time I’d made it home, but the whole trip was well worth it.

I’ve also got my pink/purple tinted glasses from the opticians. They’re really helping with my light sensitivity and reading even if they’re maybe not the most fashionable thing I own!

In other news I now own a massive 6 cup teapot so that’s at least 1/4 of my daily fluid intake sorted!!

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feeling accomplished!

So, I think I’m finally starting to get the hang of this PoTS thing. For the first time in ages I finally feel like I’m recovering and I definitely think that this is down to the exercise I’m able to do now. I honestly can’t believe how much more active I can be now; I’ve not used my wheelchair or commode for over a month.
I’m so relieved to be able to say goodbye to the wheelchair. I know I have it if I ever need it again and it’s been such a help, allowing me to carry on with life and get out and about, but I’m certainly not missing it! I’m also able to cycle on my exercise bike for half an hour most days which feels pretty amazing!

The big news though is that earlier this week I managed my first run since last November. I say run, I’m sure most people could walk faster if I’m honest. It was harder than any run I’ve done before and very slow; I didn’t get very far, but at least it’s a start. My heart rate went sky high but thankfully recovered after half an hour or so of lying down drinking water by the pint! I’ve had to tailor my exercise regime around when my highest dose of Ivabradine is due so that I’m getting maximum benefit from my medication.

I’m feeling so much better at the moment which I’m putting down to the fact that I’ve been able to increase the amount of exercise I do. I feel almost human again! I’m mainly only struggling with the extreme fatigue, lack of appetite and nausea and I had a pretty bad bank holiday Monday as I woke up vomiting but I didn’t feel too unwell after so can’t really complain.

Hopefully it’s onwards and upwards from here!

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.

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!).

if at first you don’t succeed….please fill in the form

Today I attempted to apply for benefits. After 60 minutes listening to a loop of 8 bars of Handel’s water music the last thing I wanted to hear when I got through was ‘>sigh< hmmmf >sigh< good morning my name’s …… this call will take 60 further minutes of your time do you still want to continue’. 10 mins in and they’ve given up on me and decided to send my forms in the post (they read out a paragraph of info I was required to listen to about postal forms, but so fast it sounded like when they read out small print at the end of an advert. The gist of it was if I now try and ring up to apply for benefits rather than fill in the form I will be fed to ravenous lions by Theresa May or something, it got a bit confusing at the end).

It turns out I got my security questions wrong because I moved house before christmas and the system still hasn’t updated yet. So I was given the choice of ringing up again and being on hold for 60 mins and then lying (I mean giving different answers) when asked my security questions (?!) Wow. Not wanting to spend another 2 hours on the phone giving ‘alternative facts’ to the department of work and pensions I chose a form instead. Which I imagine is going to be great fun and I’m really looking forward to it coming next week (they’re sending it 2nd class to really prolong my enjoyment and anticipation!).

on yer bike

I’ve not written in a while because the last fortnight has passed in a blur. I woke up the day after my last blog post and madly decided to take the next step: exercise! I have seen research that claims exercise is the single best thing you can do to manage PoTS symptoms, but knew this would be impossible to start without the help of drugs to allow me to tolerate exercise.

As I was now on medication I decided the time was right and it felt good to unpack all my old running gear (yes I still hadn’t unpacked them from when we moved house!).  I’ve started on an exercise bike because I can sit down and go as slow as I want. I’m not going to see the benefits for months yet, so it will be worth it in the long term, although realistically in the short term it’s leaving me worse off. 5 mins on the exercise bike is leaving me in bed for the rest of the day!

My eventual aim to to be able to run again but the eight month plan I downloaded from the dysautonomia international website for PoTS patients advises to wait until month 5 at least before starting upright exercise.  It feels good to have something to work towards though, and it feels like I’m achieving something positive.