Just a quick update now a new year has begun! Things are looking a lot more positive than this time last year. I have a diagnosis, can manage my symptoms and hopefully am not far off going back to work.
Being able to manage my symptoms while working will be very challenging but it’s something I want to do, having been off work for so long, even if it’s not quite what I expected I’d be doing a year and a half after qualifying as a nurse.
I can’t believe how things have changed since this time last year. In early 2017 I was still waiting for a diagnosis, in fact had only just heard of PoTS, but was sure I’d be working again in a couple of months. Little did I know things would first get worse before they got better, and that I would be off work for such a long time.
2018 has started off in a much more positive way. I’ve been able to enjoy celebrating Hogmanay in Edinburgh, have had a weekend away in the Peaks walking, and visited friends and family. I’m so grateful to have amazing and supportive people around me and am also glad that I am getting to make the most of my time off now I feel well enough to enjoy myself. It’s been a long journey to get to this point and it’s taken a lot of patience, determination and perseverance. I know that while I’ll still have ups and downs symptom-wise, I’m now in a much better position to get through the down parts.
So now all that’s left is to wait and see what there is in store for me jobs wise (oh I forgot to mention, Occupational Health have finally cleared me as fit to work, in a desk based role rather than clinical nurse, so I am just waiting for a meeting regarding my redeployment to a new job with my manager and HR) which seems like a huge step in the right direction!
It’s been a while since I last wrote and I’ve been very busy! I was originally waiting to write this blog post after having a meeting about going back to work with HR/my manager however that meeting which was scheduled for October kept being rescheduled and finally happened last week.
So here we are two months later than planned! The outcome of that meeting is that I am unlikely to be able to go back to work as a nurse, as although (in my PoTS nurse’s opinion) I am doing really well in terms of managing my symptoms, I can’t stand for more than 15 minutes before becoming very symptomatic. That doesn’t bother me in my everyday life as I have become very good at working round this, but clearly it’s not ideal if you have a job that requires you to be on your feet all day (or night!). So I’m waiting to see if I can be redeployed to a desk based job. Meanwhile I’ve also sent off a work capability assessment form as I’m being reassessed for benefits. As I’ve improved so much in the last couple of months, I’m extremely doubtful as to wether I will continue to get benefits. This is extremely frustrating as they will no doubt assess me as capable to work, when work and Occupational Health are assessing me as incapable to work!
In more happy news, I’m able to make the most of my time off by spending my weekends visiting friends and family, and generally beginning to feel very Christmassy! Most weekends have seen me on a train to various parts of the country and I’ve got very adept at train travel with PoTS now!
I’m continuing to manage my symptoms so that I rarely have a ‘bad’ day now. I don’t mean to say I’m symptom free, it’s just that I’ve got used to how to best manage the symptoms I do have, and to pace myself throughout the day. I’m beginning to recognise warning signs that I’ve overdone things and can slow down accordingly.
For example, it’s getting easier and easier to keep on top of my fluid intake as it’s a natural part of my daily routine now, which is a big help in terms of keeping hydrated throughout the day and really helps reduce my morning brain fog and dizziness. In the winter I’m also finding it easier to keep a constant body temperature and not get too hot, which is helping me not develop symptoms due to overheating.
It’s all getting a bit easier to manage as I’m getting used to the changes I’ve had to make in order to get this far. I had a cold last week which made my PoTS symptoms resurface with a vengeance so it’s not all plain sailing but it’s definitely a positive step forward.
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!
Let’s just say this week hasn’t gone quite as planned! I started off so drained after my last blog post. In some ways, applying for benefits is just the next positive step in the journey of getting well enough to go back to some sort of work. In other ways, it’s a horrible experience because it means admitting to myself how differently things have turned out to how I planned even though I like to turn a blind eye and think otherwise. When I left uni I’d assumed by now I would be working full time, planning holidays and travelling with friends, and moving into a place of my own. (I like to think of my time off as a kind of extended Christmas break. Shame not everyone is in a festive mood!). It also doesn’t help that the process is so confusing and feels like they are trying to catch you out at every step.
Last week I’d spent more time on my exercise bike than in my wheelchair, but this week the wheelchair has won hands down! As well as the usual, I’ve had some pretty horrendous nausea (luckily no vomiting this time, but there were some close calls!) lots of aches, pains and cramps and some truly awful levels of fatigue. Basically back to how things were before my diagnosis. I know my limits and this week was not going to be a week in which I pushed myself! I’m putting it down to the fact that I’m always worse in the week before and during my period, and that I’ll be able to power through when it’s all over. In fact I’m wearing my exercise gear while I write this as if I’ll be motivated to go and spend some time on the exercise bike later!
Highlights of this week have been making it to a gig with my family and going to a close friend’s birthday Ceilidh. There’s been a lot of laughter this week and I appreciate these moments with people who are special to me, friends and family. I’m so lucky to be able to get out and about even if it is in a wheelchair and it does take me a while to recover, it’s worth it to be able to feel normal for a little while. It’s also been fun binge watching TV with my siblings and baking (everything I’ve made this week has had baking paper stuck to it, proof that I’m not learning from my mistakes!!).
Here’s to a better week, I’m looking forward to the warmer weather (well the PoTS part of me isn’t but I am!!) and hopefully the exercise bike won’t be so lonely this week.
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!).
Although I know I have moments when I feel much better I also have days when I feel worse again. I think it’s probably due to the fact that thanks to Ivabradine I can stand more so I over-do things and end up feeling worse.
I’m really frustrated at myself today because I had a really busy weekend, but I’ve spoilt it today by having a bath this morning. I’m having to recover all day in bed which is a shame as it’s a lovely day outside. Oh well, tomorrow is another day!
Pacing is something I need to get used to, and to help me I have a few ‘cheats’ to get me through each day.
- Commode. Or as I like to think of it, my en-suite. I use it overnight, and as my Granny said, in her day everyone used chamber pots and it’s not too different to that!
- Shower chair. This piece of equipment has been life changing!! I’m so excited by the fact I can now have showers.
- Wheelchair. I was apprehensive about using a wheelchair especially if people see me getting out to go to the loo, or if I’m well enough to walk for a bit. The thought was much worse than the reality though, as it means I can go out even on not so good days, and for longer periods of time. My family are going to be so fit by the time I’ve finished with it!
- I’ve also got a seat in the kitchen, I don’t really have the energy at moment to cook but it’s useful waiting for the kettle to boil!
The spoon theory was devised by Christine Miserandino, as a way of helping her family and friends understand how she lives with chronic illness. She writes about it in her essay ‘The Spoon Theory’ on her website ‘butyoudontlooksick.com’. I would recommend a look as it’s a much better explanation than mine!
Basically, each activity that you might do in a day uses up ‘spoons’. Even little things like boiling a kettle or walking up stairs. You replenish these ‘spoons’ through rest. A ‘spoonie’, or someone with a chronic illness, has to conserve these spoons else they will run out, but someone without a chronic illness pretty much has an unlimited amount of spoons to get them through the day.
If a ‘spoonie’ runs out of spoons they could borrow some from the next day, but this will leave them with less ‘spoons’ to use in the future.
To illustrate, yesterday I was so pleased that I managed to sit up all day without having to nap, and so in the evening I decided to have a shower. However, that meant borrowing a couple of ‘spoons’ from today (climbing the stairs and having the shower took more ‘spoons’ than I had left) so I’m paying the price now. It feels like a backward step as I had been feeling much better yesterday, but it’s a little reminder that it’s going to take baby steps (which is a bit longer than I’d like it to take!).