It’s getting on for a year and a half since my last blog post and there’s been good reason for that. I’ve always wanted to keep this blog open and honest and I’d reached a point where I needed to step a way from it for a while and sort myself out mentally.
I’m pleased to say that for the large part I’m back on track. It’s not the easiest subject to discuss, but living life with such limitations and constant pain would make anyone depressed. The ‘no escape, no relief’ from it all was the hardest thing for me to get my head round positively. I was feeling hopeless, constantly low, where everything just felt too much and I’d try to bottle it up and brave face it to all around me. I certainly don’t wish to doom and gloom this blog post, but I really wanted to touch on the subject.
Before I got ill I considered the act of someone ending their own life a terrible thing, I had no idea how someone could even reach a point to consider the thought, and to do that to the loved ones that they leave behind. Then I got ill and after my diagnosis I hit a massive brick wall. It came out of nowhere, I have honestly never felt anything like it, it was unrelenting for months. I find this as difficult to explain as it was to experience, but for the first time in my life I could genuinely understand how someone could be so low as to end it all. Two things shocked me from this. One was having that realisation and the other was the confiding conversations with my GP that lead to him asking on numerous occasions if I had had suicidal thoughts. The reality of the seriousness of that upsets me even now. This was when I took a break from this blog.
Over the last year I have thankfully got my head sorted and I now feel comfortable in discussing the subject. I deal with the constant pain for the large part without medication, which is a fantastic thing considering the intensity of it, and I’m getting great at covering up what’s really going on inside with the hellish POTs symptoms, whilst managing to hold a conversation and appear ‘normal’ to others around me.
Most importantly, I am much more positive about my situation. I feel that I now sit on the fence swinging my legs on the side of happiness, but there are days that I call ‘down days’, where I fall off the fence on the wrong side and have to climb back up again. These are very difficult days and not something I can just snap myself out of, but they are thankfully just days now rather than weeks or even months like before. In reality, trying to escape depressed thoughts seems impossible, but by controlling a balance between the two, with the understanding and support of my family which I love immensely, I am where I am today; able to be the stupid, crazy person that I always used to be.
I would say that if anyone reading this is also struggling, then please don’t try to bottle it up and ignore it like I first did, talk to someone; family, friend or GP etc and ask for help.
On a lighter note, I have just returned from two weeks in the Lake District. Had a fantastic time! The journeys are much easier by driving myself as I seem to get travel sick since I got POTs and stopping every 45mins to an hour to use the loo and stretch my legs to pump the blood around a bit does help to make the 5hr journey possible, whilst keeping the POTs at bay.
I didn’t sleep very well the first night as it had been quite mild and despite taking a fan and changing the supplied duvet for my own 4.5tog, I got quite warm in the bedroom. Then followed the bathroom saga…
There were two bathrooms. Bath with a shower mixer tap and an on-suite bathroom with a shower cubical. Despite looking at the images before we booked the house, I hadn’t noticed the size of the cubical, nor that the shower mixer tap couldn’t be fixed to the wall above the bath. So I had to use the cubical and came pretty close to passing out from the heat of the steamy, confined, cubical shower which lead to a POTs attack. Not a great start to the holiday.
After driving round and walking a bit to take pictures on the first day, the morning of day two I realised I had ‘over done it’ and was in a lot of discomfort to start the day. Avoiding the shower scenario of the previous day I decided to leave all my dignity behind and sit in the empty bath and hold the shower above my head. This was not comfortable or enjoyable for that matter, but it was less dangerous than the overly hot cubical… or at least that’s what I thought until my hip subluxed.
Unable to lean forward to put the shower back on the tap, unable to move my leg to stand up and get out, I was stuck. big time. With the shower head sat in the bath and spraying water everywhere I tried to reach the door to unlock it for help, but sadly I couldn’t reach. Not wanting anyone to have to pay out for kicking the door in, I started to panic. The pain in my hip by this point was getting immense, pins and needles were going down my leg and my POTs symptoms were beginning to take hold.
Having already left my dignity behind when deciding to have a shower while sat in an empty bath, I didn’t really have anything left to lose as I somehow, little by little, pulled and flopped myself out of the bath and onto the floor as gracefully as a wet seal. Thankfully once on the floor I was able to straighten my leg out and pop my hip back in. I then spent the following two days with pins and needles and numbness. My hips sublux regularly, but in the bath I wasn’t able to straighten out my legs and follow my usual relocating routine like I normally do.
The rest of the holiday involved the dreaded cubical. I’d wash a leg, open the door, let the steam out and cold in (I had opened the roof window as wide as possible above the shower) shut the door, do another limb, open the door… it wasn’t a joyful experience, but it worked.
As the days went on, despite not doing a great deal, I massively burnt myself out. General joint pain was really bad, my neck seized up shooting pain down into my left shoulder, but I still managed to keep going and enjoy myself. I shot a great deal of good material for the library, and even managed to try a bit of scrambling, which much to my surprise was easier and not as painful as walking – I’m guessing it’s because I was able to use my upper body as well as my legs and it was much slower going than walking where all my weight would otherwise be on my most troublesome joints – my knees and hips.
I did attempt a hill to catch the sunset on a couple of occasions, after a few steps my heart was pounding so fast and forcefully that my shoulders were physically thumping and the veins on my neck were making a rustling noise as they pushed out against my wooly hat. I had to breathe long breaths in through gritted teeth just to stop myself from physically being sick. However I got to sit and experience the sunset and take some awesome pictures!
Finding a balance between the constant battle of symptoms and enjoying life is seriously bloody hard. Yet, despite the difficulties, I do it. Yes it hurts, yes I regret it afterwards (and most of the time during) and suffer more, but I’ve learnt that pain is just that, pain. I went through a stage of using the wheelchair, but the pain is still there when resting and sitting – to me it’s not a solution, just a hindrance. So I thought why not experience pain while doing normal things, I get great satisfaction when I’m able to appear normal and ‘blend in’ with the crowd. Besides, you get bloomin cold sat in a wheelchair, especially in supermarkets! I’m not damaging my knees and hips or my shoulders for that matter, I’m getting good at avoiding subluxing my joints and better at getting them back inline when I do. POTs flare ups and the associated symptoms of an attack do ease after a few days of not doing much, and that is why I’m a stubborn arse and push myself too much.
Feeling really low today. Last night I had severe chest pain (I normally get chest pain, but not anywhere near as bad) I tried to ignore it until the point where I was struggling to draw a proper breath.
Mum phoned an ambulance and a paramedic came out. My BP was high, I had a slight temperature, and my POTs was starting to break out into a usual attack on top of the chest pain. The paramedic did an ECG and other obs and then proceeded to spray this stuff under my tongue and give me ‘asprin’ (I tried to question about the aspirin thinning my blood and making my POTs worse, but he said he wanted me to take it). After both the asprin and the spray, my chest pain started to ease, and a little while later he sprayed the stuff under my tongue again.
As the pain in my chest eased, my POTs was going mental (I had two of my POTs attacks, pushing out well over 200bpm laying down, and my joint pain was unbearable in my hips and knees from the leg convulsions).
He said he wanted me to go to A&E for further tests and phoned through for an ambulance to take me. When the ambulance arrived, I struggled on my crippled legs to get to the bathroom (f-in and blinding as I moved). The paramedic on the ambulance put a cannula in to give me morphine for my joint pain, but said he was concerned about my fluctuating BP, so I opted to bare it and pass on the morphine (although today I would love some!).
The spray (i think he called it nitroglycerin) and asprin may have done the trick for what ever caused the chest pains, but dear god! It was like I wasn’t on my heart meds, my pots was going nuts!!
There was a long wait in A&E (although I got a bed straight away and the nurse took bloods straight away – it was snowy last night, so there were some accidents). I eventually saw a Doctor and he sent me to get a chest X-ray. With the Chest x-ray all clear for infections, and bloods all clear, the only abnormality was nothing serious, but something to do with my ECG results.
We eventually got home at 5am this morning, and I feel “@*!#” to say the least. I see my GP for one of our routine catch-ups the end of this month, so I’ll discuss things with him then.
Another course of antibiotics down. I can’t quite believe that I managed to go 8 weeks between courses as opposed to the usual 4-6 weeks… here’s hoping it’s a sign of things to come.
The last few days since finishing have been worse than when I was on the antibiotics, but I’m guessing it’s largely due to the blood going to my stomach, which is currently gargling and churning like some ill stacked dishwasher. The pressure in my temples is getting frustrating to say the least and its not doing wonders for my vision either – everything looks ‘dream-like’… but hopefully things will pick up as the week goes on and I’ll be heading towards another 8 or more weeks until I’m back on them again.
Needless to say the car has sat in the drive for the last two weeks and I’m certainly missing driving. Previous to this, the New Year had got off to a good start; the cold spell we’ve just had and large amounts of snow had proved wonders on the photographic front! Driving to small lanes, stopping and photographing, before driving somewhere else had really enabled me to make the most of it, without pushing my POTs too far. I’d then come home and rest before popping out again in the afternoon. Small doses seems to be the way forward!
As I write this I am sat at the table of our holiday cottage in the Lake District, in two days time I will be traveling home back to Norfolk. Holidays here have changed quite considerably since PoTS.
I fell in love with the Lake District years ago during childhood holidays. Running around, skimming stones on the lakes, standing in awe of the mountains surrounding the lakes, and even swimming in the lakes themselves. As I grew older and became a photographer this passion evolved and the holidays became trips of exploration into those very mountains I used to stand staring up at. Walking up on top of them, first with my parents, and then more with my younger brother (aka Rock climber and all round ‘mountain goat’).
I loved it, the sense of achievement and endurance needed. Getting caught out in adverse weather (including caught in a lightening storm at the top of one particular peak; the most scared I have ever been) and stood above cloud watching the sunrise…
Now life sits more on a lakeside level. I am once again that young boy stood at the shore of the lake staring up at the mountains in awe of them. I have more sense than to go swimming in the lakes these days, and I also have more sense than to attempt to go ‘up’. Map skills learnt whilst exploring the peaks now allow me to find photographic potential at the shore of the lakes and plan the most direct and flat path available to reach it.
I arrived in the Lake District two weeks ago and immediately felt that same calming sense of peace, that sense of ‘I’m home’ that I feel every time I visit. Life full of the stresses of chronic illness seem all that much easier to handle here. The views are a well deserved distraction.
I’ve learnt more than ever on this trip not to push myself too far and most importantly to know my limitations. It’s hard to watch as others thumb over Ordinance Survey maps planing the route from the car to summit; I miss the excitement and adventure of it all, but on the other-hand a simple slope leaves me fighting for my breath, heart pounding through my throat with a sense of intense nausea – climbing mountains? well, I know its not an option anymore.
I have shot a wealth of great images. Parked close to viewpoints, walked short paths to viewpoints and pushed myself up small slopes to reach viewpoints. Hard? Yes. Worth it? Definitely! My EDS has played havoc and pain has been ‘the name of the game’, but again just like the onslaught of PoTS symptoms while out and about, I know I can cope with it. I can manage it, and that, after all it’s what living life with a chronic illness is all about.
I went to see the specialist recently; a rather long day factoring in the journey to London by ambulance. Fortunately this time I made a point of asking them to stop on on route at the motorway services so that I could use the loo and stretch my legs.
Once at the hospital, I made full use of my wheelchair. It was hot in there and after the long journey it was a welcome relief. Those of you that know me well will know how much I avoid using it, but in situations like this, any aid to help with the long day would hopefully mean less recovery time over the coming days.
We were seen after not too long a wait (but more than long enough for a warm waiting room). I had the usual obs. done; laying and standing blood pressures etc, before going back to the waiting room for a short time before being called in for my actual appointment. I was informed that laying my pulse was 65bpm (i.e. normal) and then standing it shot to 110bpm (despite the beta blockers) and I wonder why I can’t gain weight haha! with my pulse shooting to ‘exercise’ levels each time I stand let alone move about, its hardly surprising. That said, after a few minutes or so my pulse does settle to around 85-90bpm (still high, but I’ve learnt to cope with the initial ‘assault’ on the body when I stand and hopefully make it seem invisible to anyone else). It was a year ago that they last saw me; I was in hospital for my autonomic tests and not on any medication, I could hardly sit up in bed my pulse was so high and standing felt, well, impossible!
I was congratulated on numerous occasions throughout the appointment, especially for my positive attitude towards my POTS and EDS. The only change has been one of ‘learning’. I know I keep mentioning this, but it is all down to learning my limitations and sticking within them. That’s admittedly impossible to begin with, then you soon learn to find your limits and you begin to cope, then you despair that you have these limitations and overdo it, causing a crash, then you learn from the crash and manage for while within your limitations before (yes you’ve guessed it) despairing and overdoing it again and so the cycle continues… but getting on for two years down the line, I am becoming content with my life and plod along with much more positivity than despair. I won’t lie, its impossibly hard at times to stay positive, but I do so with three golden rules: Live within my limitations, have a positive attitude, and set small goals. Achievements are my biggest boost (like the small goals I set and achieved at my brothers wedding) it’s far better to achieve small goals than setting something impossible to achieve and being struck back by defeat.
Getting back to my appointment… we discussed another medication in great depth, and although I could see how it might help, there are no guarantees it would be anymore beneficial than the combination I take currently, so it will sit on a back burner until such at time when I feel I wish to try it. It’s all trial and error as there is no cure by drug, just drugs that can potentially ease symptoms. So they said if I want to try something else next month; give them a ring, however if I don’t want to try anything else for another 3 years, then its not a problem; they simply wanted to make me aware of the options available. So all in all, carry on as I am and they’ll see me again in a years time.
Quite a lot has gone on over the last month. I finally feel that now I can sit back and sigh with relief now that it’s all over and various things are in order and sorted. I’m terrible, if something needs doing then I simply HAVE to do it right away, I hate lose ends and mess! I’ll write up abut them all as separate posts during this week, but shall start with the wedding.
I knew it was not going to be an easy day to deal with, but wanted to achieve 3 things and I knew to do so would make me very happy:
1) blend in and appear as normal as possible on the day. No pots attacks, or seizures in front of anyone, no use of the wheelchair etc.
2) manage to sit through the ceremony and witness my brother and sister-in-law getting married.
3) appear in all the professional photos (again looking as normal as possible).
I am proud to say that I managed all three!!
My body was pumping with uncontrollable adrenaline all day and I managed to stand up and function fairly normally despite my heart pounding through my entire body. I was nauseous, dizzy (talking to family members, but completely out of it so have no idea who, what where or when or what was going on!) hopefully they didn’t notice or think me rude at the time. On top of that, my heart rate was racing – even sitting during the ceremony I clocked my pulse at 110bpm, but much faster standing obviously.
After the ceremony, boiling hot in my ushers suit and unable to see properly through my massively dilated pupils, we went outside. My brother (I’d just like to point out that I have two very understanding and amazing brothers) anyway my older brother, despite the pressures of it being his wedding day, still sought out to make things easy for me. So we got all the photos that featured me done first!
By this point I was faced with hanging around making small talk, but my heart was fluttering all over the place… I had pushed myself as far as I could, I knew I needed to rest. Upstairs in my parents hotel room I crashed out on the bed exhausted. My body had effectively been running a race all day! My other younger brother saw me to the room, before leaving me to go and have his meal (which I skipped as I knew sitting to eat would end badly and I’d fail on achievement 1).
Dad came and checked on me just before they were about to eat. and I insisted I would be fine (I think we both knew I wasn’t, but I wasn’t about to ruin the day for anyone). half hour later I was having a seizure, so phoned my younger brother and he and dad came back to help me through it (good timing on my part as I managed to have it between starters and main course!).
My older brother (the one getting married), text me during his meal to say all was fine and to comfort me as I had broken down in tears during the seizure, exclaiming that I wish I could have been normal for just one day, just to get through the whole day, have the meal, hear the speeches etc…
Before the evening started my younger brother drove me home (previously planned as I knew with pots that I would not have coped with the hustle and bustle and loud music). Once home I went to bed.
It was a very long and very difficult day to handle, both mentally and physically. But, and this is a big but, I did achieve the 3 things I wanted to achieve before I went!
Everything about this illness, from coming to terms with the limitations to dealing with the limitations, its all been a vast learning curve. With each new hardship or task I have to face, I step back and think it through before proceeding, in an attempt to find the most ‘pots-friendly’ option. Some decisions haven’t been the best and others have gone without a hitch and I have managed to cope well with said scenario. The decisions that didn’t go so well I put down to experience; all part of the ‘learning curve’.
Most recently (when it came to driving again) I wisely went on my parents insurance to try it out before spending my own money on a new vehicle. First impressions were great; providing my pots wasn’t too bad, then I coped rather well with driving again. Eager to get driving again, I set off with my parents to view some cars. Unfortunately I wasn’t feeling great at the time and by the time we reached each of the garages I was far too potsy to trust myself test driving the vehicle, so dad kindly did the honours.
Eventually we found one and I bought it. The following days saw a return of the stomach infection so I had to leave it to my parents to collect etc. When I felt better and went for a drive I suddenly realised my mistake in not test driving it myself… the clutch was heavy. It suddenly dawned on me that my parent’s car quite literally has the lightest clutch in the world, so light in fact that you wonder its actually connected to anything. Within minutes of driving my new car my EDS in my left hip and knee were on fire.
I tried not to let it get to me and over the coming weeks I tried everything I could to deal with the pain and attempt to ease it in anyway possible: sitting closer, sitting further away, taking it out of gear so I didn’t have to sit with the clutch pressed down at lights etc. But no matter what I did, even short journeys left me in a lot of pain…
Two days ago I was going to head out with my parents for a walk at our local woods. My knees and hips were no more sore than they would be on an average day, so I opted to drive. We came to the junction that leaves the green where I live, I looked left and there was a car coming from quite a way up the road – plenty of time to pull out in front of it. I pressed the accelerator and lifted the clutch as you would to find the biting point and pull away, only, my joints just collapsed on me and my leg flew off the clutch pedal, causing the car to immediately stall and jump forward into the road. Now in a great deal of pain I was faced with the approaching car and no option but to dip the clutch again, select reverse and get the car out of the road, but in agony my left leg gave way on me again.
Fortunately it was only a small country lane and the approaching car had slowed down and managed to pass in front of me, but it shook me up. With no warning my joints had just given way on me… I couldn’t help but think, what if that had happened pulling out onto a busy road? I could have caused a serious accident. I only got back behind the wheel on the condition to myself that I would not drive if my illnesses put me at risk to myself and other road users. Long story short, I just can’t trust my joints to drive a manual car anymore.
I have not been in my car since, and have spent the last couple of days thinking long and hard about where to go from here. My only option is to get an automatic. I simply don’t want to risk my knee giving way on me again, and it will also solve the problem of major joint pain after driving.
Sadly I will most likely lose out on money having just bought it, but theres no point having something sitting in the drive that I am unwilling to drive. It’s another learning curve, albeit an expensive one.