back to work

Hello again!

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.

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new year

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!

making the most of it 

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. 

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!!

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!!!