My Chronic World in my Words.

Before I get started I would like to thank those who have been reading and/or sharing my blog posts. It means so much to me, particularly my blog post ‘Out & About in my Wheelchair’. So please if you read something you like/agree with/think other people should see then please give it a like and a share. 

My aim when starting this blog was to raise awareness about Chronic and ‘Invisible’ Illnesses. As well as raising disability awareness. To do this i’d like to speak openly about my life with several Chronic Illnesses and Chronic Pain. To give an insight as to what life with a chronic condition and chronic pain can look like. I want to talk about the good days, the bad days, the ‘I don’t know days’.

I plan to give you an overview of where my life is at currently to enable you to join me through life. My aim isn’t to just talk about doctors appointments but to give you a real insight into life. Things I do, places I want to go and the consequences of my decisions on my health. Obviously I can’t blog about everything, so I will aim to keep you updated on daily life via my social media, either via Twitter: @worldin_mywords Instagram: @worldin_mywords and Facebook: @The World in my Words 17.

Although I’d mainly like to talk about my life now, I would also like to talk about what it was like growing up with a chronic illness and the challenges I faced during my school years (because believe me there was a lot!).

So, before going back to the beginning (in bullet points don’t worry!) i’d like to say that opening up about my life with chronic illness isn’t easy. I don’t imagine it to be for anyone however, since starting my social media pages and finding other people just like me I have discovered a very kind, caring and open community. When you have a chronic illness you tend to shut yourself off  to protect yourself but also the people around you. I have never been particularly open about my ‘chronic’ life particularly when I was at school and I have now realised that it probably did me more harm than good. Opening up and letting my guard down is going to be difficult so I will do the best I can, we will take it one step at a time. I am more than happy to receive questions however, if I am not ready to open up about that question then I won’t. I’m going to take my time with this.

Anyway, enough babbling…

  • Aged 10 I was diagnosed with Juvenile Dermatomyositis (JDMS/JDM). This is believed to be the main cause of my chronic illnesses.
  • Aged 12 I was diagnosed with Chronic Fatigue Syndrome (CFS) and Chronic Pain.  Later on that year I was also diagnosed with Hyper-mobility Syndrome. 
  • Aged 15 I was diagnosed with Complex Regional Pain Syndrome (CRPS) in my left wrist, which unfortunately as now spread to my left foot and left knee.
  • Aged 18 I was diagnosed with very mild Scoliosis. Despite my main problem since age 18 being back pain the diagnosis of scoliosis is thought to have been an accidental find and due to how minor the curve in my spine is it isn’t believed to be the cause of my back pain.
  • Other random diagnosis… since the JDMS I have had problems with Acid Reflux I was treated for this when I was younger and it disappeared however, it came back with a vengeance as i’ve gotten older. I currently have difficulty swallowing and after many tests I have been told that I have a Weak Swallow. I am awaiting an appointment in October to find out what happens next. The words Irritable Bowl Syndrome (IBS) have been thrown around for quite a few years, I am currently having a lot of issues with my stomach which will be discussed more in my upcoming appointment in October. However, I am also currently awaiting Coeliac Testing (although I don’t expect this to be the problem).

Where am I now? 

I am in remission from the JDMS and have been for a number of years now, I am very grateful that this disease is no longer active. However, it is believed that the JDMS left damage to my body i.e. muscle weakness particularly in my legs.

I still suffer from CFS and I do my best to pace myself however, I’m not always very good at this. In fact I think the older I get the worse I am at doing this. I desperately want to be like anyone else my age, to explore, push myself to my limits but unfortunately my body frequently tells me I can’t. I suffer from a lot of fatigue but also the things that come along side that i.e. Brain fog, short term memory problems, confusion etc. I do also still suffer with widespread pain however, certain aspects of this pain could be put down to my other conditions. Although I am usually quite good and knowing which condition is responsible for the pain that I am in.

My hyper-mobility is a constant problem for me! Honestly this is probably my most ‘annoying’ condition. Due to HMS I have extremely lax ligaments which means that my knees hyper-extend (they go back too far) causing a lot of pain, my elbows also hyper- extend as do my fingers. It also means I am prone to dislocations! (Whoo.) However, it is rare the I fully dislocate I tend to ‘just’ sublux. Which means my joints partially dislocate and usually put themselves back into place but believe me this does not mean the pain is any less! My fingers are the worst for subluxing and during a bad week my fingers can sublux several times a day (however, to prevent this and to help ease the pain I usually strap my fingers up). Now unfortunately my body has found a new part to sublux… my shoulder! The right to be precise. In fact whilst I am writing this blog I am in a lot of pain due to subluxing my shoulder last night. Around 2/3 hours ago my partner James tapped my shoulder up for me to ease the pain. As I’m on holiday I’ve decided this is the best thing to do particularly as it is still in place but I plan to get some advise from my GP when I get home. Note: since writing this I have seen my GP, been to X-ray and minor injuries I have a subluxed shoulder and am currently using a sling. Unfortunately there was only the lady who did my X-ray and other nurses to review it. Now the X-ray department didn’t report the case therefore the very lovely nurse who gave me my sling said that he could only give me a sling and advise me that if my pain doesn’t reduce in a week to go back to minor injuries and get a referral to the fractured clinic. He believes this may be a possibility as the X-ray doesn’t look great to him but as X-ray didn’t report it he’s not allowed to overrule without a doctor and there wasn’t any available. Overal recovery should if things go straightforward (which would be a first for me) take 4 weeks however, it could take longer due to my body, conditions and my healing process. I will keep you all updated! 

The X-ray of my subluxed shoulder.

Now although personally I don’t like to think about being ‘lucky or unlucky’ when it comes to the type of illness I have. I would say I feel quite lucky to not be heavily affected by my CRPS currently. Although this could change at any time. My wrist and foot used to be my most problematic area however, now it is my knee which in general I’m managing but this is helped due to the fact I am often reliant on my wheelchair for other problems therefore I’m never putting too much pressure or strain on my knee.

Now obviously I have mentioned scoliosis as this is an official diagnosis I have but I am not going to talk about my back pain as scoliosis because according to the doctors that isn’t it. So for now I will say I am not affected by Scoliosis but I do have back pain which I will explain in the next paragraph.

Back Pain. Currently (and I am going to be semi but only semi over dramatic here) it feels as though it is ruining my life! It kind of is if i’m honest. I guess my back pain comes under my Chronic Pain diagnosis so, I have been suffering with severe back pain since around November 2015. However, it got extremely worse in March/April 2016 and again increased around November 2016. Bringing us to April/now where I guess I could say I am slowly drawing closer to being wheelchair bound. The pain I suffer from in my back isn’t necessarily like the other pain I get. The pain is usually in my lower back but can spread anywhere in my back. The pain can also feel as though it is shooting up from my legs it’s almost like lasers shooting up my legs and into back (or at least this is how I picture it. Believe me this isn’t the oddest way I’ve describe pain before!). This means I am unable to stand for more than 30 seconds to 1 minute without pain. Some days it is easier to stand and walk but that does not mean I am not in pain. 

What does this mean for me now?

Due to my back pain increasing at the start of this year I had to leave my dream job working in a theatre. This is something I plan to cover in a future blog so to keep this short and sweet I will say this; leaving my job in theatre was probably one of the hardest things I’ve ever had to do. I am a go get it type of girl and I put my all into getting that job and all the work I had done prior to it in other theatres, college and school. I worked hard to get to where I was and loosing that was devestating for me. However, the relief I felt when I left such a physical job was not something I had experienced before. Therefore I know I did the right thing and before I’m asked no, there wasn’t anything else I could have done to make it work. A day at work left me unable to walk and I was in severe pain. I have made peace with the fact I made the right decision however, I don’t think I am over it yet. 

Once I left this job I decided to take up a desk based job at a hotel in Events as this was something else I am passionate about however, this didn’t  work for me either my commute was long, my pain was high, brain fog had no clear end in site and I was exhausted. Between myself, James, my GP and a rheumatologist it was decided I needed to give up work for the time being. As I said I don’t want to go into this too much but currently I am focusing on me and my health. I’m going to many hospital appointments and I’m attending my local therapy centre which is essentially a disability gym to try to help gain some muscel strenghth. I am also still volunteering once a week for less than 2 hours with our local youth events management group which I have been doing for years. This and my new found love for blogging keep me going and I hope to eventually return to some part time work. 

To summarise, I am currently dealing with a lot of pain, fatigue, brain fog and many other symptoms. I am quite reliant on my wheelchair and the very few times I’m not using that I’m using my walking stick. I take a lot of high dosage pain killers as well as my stomach meds. I am currently trying another pain med and I’ll keep you up to date with how it’s going, so far I’d say minimal to no relief but side effects include some minor drowsiness.

Saying goodbye to the beach in Saint Malo.

So this is me and my chronic life. As I said I’m looking to go into more detail in other blogs so let me know what your interested in etc. 

Holly

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