The Most Difficult Parts of Receiving Treatment for Chronic Illness

The night before my first Blood Patch surgery, I wrote a piece for the Mighty which has just been published so I wanted to share it with you too. It’s all about the difficulties people with chronic illnesses go though when getting any sort of treatment. Here it is:

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On the eve of having a surgical procedure to try and treat an aspect of my condition, I’m anxious.

Anyone would think I’d love to take a week or so off work and be forced to take it easy, but I’m worried about how hard it’s going to be on the rest of my body. I have postural orthostatic tachycardia syndrome and Ehlers-Danlos syndrome. A really difficult thing with a chronic illness is pacing. Doing too much can make you too ill to get out of bed for a few days, doing too little means you body becomes deconditioned which can make you too ill to get out of bed for a few days. It’s a vicious cycle. And after any kind of treatment you have to rest up, but try not to rest too much. After this procedure (a blood patch to hopefully help seal up a CSF leak) I have to take it very easy for six weeks and I may have to have three of these procedures, meaning I’m taking it easy until the end of April. I can’t lift or bend normally as it really affects my POTS and my pain, but after this procedure I am strictly not allowed to, I won’t even be able to push myself around in a wheelchair or walk the dog in case she pulls too much, meaning my regular exercise goes out of the window. This worries me, as the last time I just stopped doing things was before I was diagnosed and it was the worst my health has been. I couldn’t get out of bed and my mental health suffered majorly. So I’m worried about finding a way to keep my pacing strong without risking the effectiveness of the treatment and/or a major flare up.

Another difficult thing with chronic illness is that treatments aren’t guaranteed to work or even help. I am worried that it won’t work. It’s taken nearly a year to get my POTS stable enough to have the intracranial pressure monitoring (which I had in November) to find out if I did have a CSF leak, get diagnosed with a CSF leak and find a way of treating it. If it doesn’t work, I will have wasted another four months and three procedures to be back to square one. I worry if it doesn’t work that I will have let myself, my family and my doctors down as everyone has put in their best efforts to help me get rid of my “everlasting headache,” as I like to call it, and my body just doesn’t want to respond the way it should. But we all need to stop feeling so guilty for being ill, it’s completely out of our control.

But the most difficult thing I’m finding about getting treatment as a patient with chronic illness is that, if it does help, friends and family think you’re am cured. And if it doesn’t help, there’s an expectation that it should have helped. My last operation was just an invasive investigation yet people who knew this still thought it would’ve made my headaches disappear. I understand the notion, of course. If you break an arm or a leg, it’s painful, you go into hospital, they plaster you up, you spend six weeks recovering and it’s fixed. When you have chronic illnesses, however, there’s so much more to contend with. I manage my POTS with medication but I rely on it and if I forget a dose I know about it. My EDS causes major fatigue, widespread pain, unstable joints and and gastrointestinal issues and unfortunately I am going to have to live with those symptoms for the rest of my life. Whether this treatment helps to get rid of my “everlasting headache” or not, I will always be chronically ill.

Let’s say you went to the doctor for a chest infection and you happen to also have a broken arm. The doctor gives you some antibiotics which cure you of the infection, but your arm is still broken. My story is just as simple, in a roundabout way. I went to the doctor for a headache and (after two years) they found the cause of the headache. I happen to also have two long-term conditions called POTS and EDS, they did some treatment for my headaches and one finally worked, but I still have POTS and EDS.

With chronic illness, I am often made to feel that if I go into hospital for something I should come out and all my problems should be fixed. But remember you can’t expect antibiotics to fix a broken arm, so don’t expect a procedure for an small aspect of a condition to cure someone of a chronic illness. It’s called “chronic” for a reason.

New Experiences & Meeting a Fellow Zebra

Is it too late to say Happy New Year? It’s still just about January so I think it’s okay 😛 I’m allowed to say it because this is my first blog post of 2017! Hope everyone is having a good year so far. I’ve been busy this year. The first 10 days disappeared with movies, work, molly walking, and seeing family and friends. On the 11th I had my first Blood Patch Operation which had a much bigger affect on me than I thought it would meaning I was flat in bed for 3 days, unable to walk properly for a week and I’m still relying on my stick to get me around outside. And I’ve had to cancel going to see Busted with my brother and best friend because I’m just not going to manage standing which is a real shame as the tickets were a birthday present and  I was looking forward to. For the last two weeks I’ve spent a lot of time on the sofa watching films, Once Upon a Time and The Ellen DeGeneres Show. I’ve had a lot of extra pain in my back and have found it difficult not being able/allowed to bend, stretch or lift at all. Not being able to bake or cook because of it has really sucked! But mum has helped me make my Granola so I’ve at least had yummy food for breakfast. Being so sedentary has really badly affected my Ehlers-Danlos Syndrome causing major flare ups in my shoulders, knees and hips. And the cold weather outside has not helped either. Unfortunately the surgery has also not worked as well as I hoped. I think it has helped my headaches a little but as I sit here typing with an awful one I know it’s not quite done the trick to fix my CSF leak so they are repeating the surgery in February (which we expected) in the hopes of further improving my symptoms. You can keep up to date with my day to day activities on Instagram & Twitter ( @1nvisibl3Girl) as this year I’ve decided to attempt the #pictureadaychallenge . The night before my surgery I also wrote a new article for The Mighty about the difficulties in receiving any kind of treatment when you have a Chronic Illness and you can find that article Here.

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But I wanted to tell you about slightly more exciting things. You many remember that in my post before Christmas I mentioned that my friend Dan Parker and I were going to be contestants on a new  TV game show hosted by Noel Edmonds and earlier this week we did exactly that. Probably not the best idea 10 days after my op but I knew I could be sat down the whole time, it was something to look forward to and we had absolutely nothing to loose so off to Bristol we went. Dan was very sweet and was my bag carrier the whole 4 days we ended up being there. The hotel was lovely, wish we’d have got time to have used the spa and wish I was able to swim. The first night was freezing which was not good for my hands or feet but every night my room was on a higher floor and slowly got warmer each time 😛 The restaurant were great too I wasn’t expecting much but I managed to have a lovely sweet potato and black bean chilli with rice. On the 3rd night the host took pity on me having to have the same dinner again and had the chef make another dish suitable for my Gluten free, Dairy free, vegetarian diet and brought out a lovely Nasi Goreng with Peanuts which took me right back to my time in Bali. I was very impressed. I have never seen a TV set before let alone been on a TV show so it was a really interesting experience. We went through briefing, wardrobe, make up and spent a lot of time in the green room. I knew there would be a lot of waiting around in TV but I didn’t realise quite how much. The sitting all day was awful for my hips and shoulders and on the second full day of waiting I ended up lying across sofas and floors just to get comfortable. Waiting around can be really tiring as well especially when early starts are involved; being up, medicated, dressed and fully made up and on a mini bus by ten past seven was a huge challenge for me and not one I could repeat in a hurry. But the one thing I didn’t even think of in TV is the amount of wonderful people you get to meet who come from all different walks of life. We met some lovely couples from policemen to events organisers and serial game show contestants. We were in a group of about 12 (6 couples) for certain call times. A group of completely random people but you’ll never guess who I met? (I mean its not like a haven’t mentioned it in the title or anything) Another lady with EDS! I think we were both as surprised as each other as we discovered we were fellow Zebras just as I had been telling another couple about my ‘rare’ connective tissue disorder. She was on crutches, and had been for a year due to a bad knee dislocation and I was still reliant on my stick from my op. It was great to go through this new experience for both of us with someone else who totally understood the pain and fatigue involved in waiting around, sitting in one place and not getting enough exercise. We also ended up being on the same programme and talking to Noel about our condition on the show which will hopefully be shown and received well and raise a little bit of awareness for EDS which would be great. I did , however have a not so great moment but the mixture of an early morning, extreme fatigue, difficult medication management due to a 5:30am start and the adrenaline rush of playing the game sent my POTs crazy and meant my legs started getting pretty uncontrollable shakes after topping up on meds, having some grapes and lots and lots of water in the green room I recovered well enough to carry on recording after the break. The show will be aired at some point over the spring or summer and will keep you updated as to when its on. It looks like its going to make an awesome show and I was really glad to be involved in it.

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It’s not long until I’ll be having my next operation and it’s difficult as I will only just start to be feeling back to my level of normal by the time I have to start the whole process again and it’d difficult knowing having another painful procedure which is in very recent memory but at least this time it will be easier as I know exactly what to expect and hopefully it will give me some more relief from my head pain. 🙂