I know it’s been a while but so much has happened in the last few months it’s been a bit of a blur.
I finally, finally am working again- I’ve been redeployed to an office role in an HR department. The picture above was taken on my first lunch break! It seems to be going well but it was such a shock to the system getting back into the routine of work. I was lucky enough to be able to do a month of very light admin work a couple of days a week that my previous manager organised for me so I’ve been able to go back almost full time into my new role.
So far I’ve surprised myself in how I’ve managed to settle in. I’m very exhausted and achey and have had a couple of days full of intense symptoms at work but I’ve coped and new colleagues are being very understanding which is a massive help!
I have an emergency draw full of salty snacks, a huge water bottle, a desk fan, ginger tea (for the nausea), and cans of coke (I don’t know why but on the rare occasion I’m feeling really bad but I’m out and about and can’t go for a lie down, a can of coke, which I would never normally drink, can really help with the brain fog and pre-syncope especially, just until I can have a lie down). My pink tinted glasses are also a miracle worker as I have to spend my day staring at screens which would otherwise give me headaches, contributing wonderfully to my brain-foggy state!
I’ve discovered the key to surviving the working day is to eat little and often (rather than a big lunch in the middle of the day), take things as slowly as I can, have frequent breaks to make drinks and visit the loo, and use my lunch hour to sit with my feet up and a cup of tea. And then once I’m home I do as little as possible and go to bed early in the hope I’ll have recovered enough to go into work the next day!
I also have a shower and prepare everything-my food, drink, bag and clothes-the night before so that my morning preparation only involves eating and getting dressed. And if I’m too tired to have a shower in the evening then there is always the saving grace of dry shampoo and some baby wipes!
I’m still coming to terms with the fact I am not pursuing my dream career as a nurse and I am finding it difficult to accept that it may be for the best in terms of my health. However I’m just so relieved and glad that I can work at last and am so grateful for everyone who has helped me get to this point-the health professionals, those at work, as well as family and friends and my lovely boyfriend.
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.
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!