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2 weeks in the Lake District and the darker side of living with chronic illness.

November 18, 2014

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.

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6 Comments
  1. Hi Liam,
    Great blog! I also have EDS and POTS, so it’s been really interesting to read another guy’s experiences of the conditions.

    I thought this was a particularly brave post to write. They’re difficult conditions to live with physically and psychologically. It’s really good you’re feeling positive at the moment, I hope it continues for you.

    I also really related to the post about your brother’s wedding. Days like that are a huge challenge with EDS and POTS.

    Thanks for a fascinating read. I hope you’re having a good day today.
    Best wishes, Ceri.

    • Hi Ceri, many thanks for the kind words, really appreciate it!
      You’re right, it’s certainly not easy, but it’s amazing how well we learn to adapt. I’m glad you found my ramblings of interest 🙂
      All the best,
      Liam.

      • Hi again Liam,

        I came on your site hoping to email you, but I can’t find an email button. So this is an email rather than a comment!

        I started my own EDS blog recently. I just wanted to ask if you’d mind if I included your blog in my list of ‘blogs I follow’? It would link to your site so you might get a few extra hits (probably very few though as my blog has only been going 2 weeks!)

        I like your blog a lot and it’s the only other EDS / POTS blog I’ve found written by a guy. So it would be good to have it in the list, but only if you don’t mind? I’m very new to blogging and I’m told it’s polite to ask before linking to someone’s site.

        Thank you. – I hope you’re having a good and pain free day!

        Thanks, Ceri.

        My blog: http://www.reluctantcontortionist.co.uk

      • Hi Ceri, yeah that’s no problem, feel free to add a link. Thanks for asking!

        Liam

      • Thank you Liam. – Sorry, I didn’t mean for my second comment to appear on your blog. It’s fine with me to delete it (and this). It looks like I’m trying to plug my blog on yours, which is rather cheeky!

      • Haha, no worries, that’s fine. I’ll have to look into adding an ’email me’ option to the blog.

        Liam

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