Friday, 10 April 2015

Where have I been?

You might have noticed that over the past couple of months things have been quieter on my blog, I've posted as much as possible but I hadn't realised just how little that was. At first it was lack of inspiration that was getting in the way but there has been another reason as well that is making things a lot more difficult unfortunately.
 
If you're a regular and long time reader of my blog then you'll know that my health has never been too great, I documented my 2 spinal surgeries on here in hope to help others going through the same. After the problems with my spine cleared up I stopped talking about my health though, I do sometimes feel a bit wary about talking about it in fear of attracting negative comments as I have done in the past. I feel like it's time to write a post about it though as it took me years of going through disbelieving doctors and unhelpful hospital appointments for me to reach the diagnosis that I've now got and I can't help but to feel a little alone so I imagine others who are suffering similarly might feel that way too.
 
I've already had a diagnosis of Marfan's Syndrome since I've been very little that has subsequently caused multiple different problems such as the Scoliosis which was what I had the spinal surgery for. For a while though I've known that there was something else causing me such severe widespread pain on a daily basis. Sometimes it's difficult to just get out of bed in the morning and get dressed, over the past few months things have gotten worse. I'm using a crutch now to help ease my hip pain and a wheelchair sometimes for longer trips out. I thought that I would never be believed by any doctor about my pain, fatigue, headaches etc. (there really is too many symptoms to list right now!). This week though I finally saw a specialist rheumatologist who completely understood everything I told her and she was able to give me an answer there and then after a few tests. I was diagnosed with Fibromyalgia, it's a long term chronic pain condition that can cause multiple problems but is mainly known for the widespread pain that it can cause. It explains why some days it feels like my whole body aches but I can never work out why. Suddenly all of these problems I've been having for months can be explained and it feels like a massive weight lifted off my shoulders. At the same time though it feels like extra weight, another problem that can only be managed, not solved. I've been referred to the right people though so I'm looking forward to hearing what they have to say and discussing how we can manage it.
 
I'm planning on starting a second blog just for me to talk about my health, mainly for others who have similar conditions. But I do plan to do a whole post on Fibromyalgia on here though, I'm always looking to create more awareness and spread information where I can on invisible illnesses. Please do not think that I'm writing this post for sympathy or attention though, I find doing this helps me a lot. I know not everyone wants to hear about it though hence why I'm setting up a second blog, as soon as I think of a name anyway! As always thanks to everyone that has given me so much support on here and Twitter, it truly does mean a lot.
 
Shona x
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6 comments

  1. Oh Shona you poor thing. I hope to god no one thinks you are writing this for sympathy! If so shame on them. I really hope you find a way to manage this x

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    1. Thanks Sam, I'm sure slowly I will find different ways to do things and be able to live the life that I want to, I don't plan on letting this stop me from doing the things I love :) x

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  2. Hi Shona x I just want to send you lots of love x We know that you're not looking for sympathy but I'm going to give your some anuwas I don't know if you' remember but I suffer from both Fibromyalgia and Chronic Fatigue Syndrome x It's tough having something that people can't see, and that literally alters your entire existence but although it can't be cured there things that can make it slightly more bearable so I hope that you find something that works for you x Keep fighting lovely and I look forward (is that the right phrase?) to reading your new blog and if there is ever anything I can do or any questions I can help you with you know where I am x (LouLou699 on twitter) x Take care x

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    1. Thank you Louise, lots of love for you as well. Nice to know there are lots of people here for me if I need some support :) Hoping to come up with a good pain management plan for myself x

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  3. I'm so glad you've finally been given some answers and now know what's wrong. I don't have the condition but I have seen how it can affect someone and make you feel achy and tired and so many things you just can't seem to understand. It's a shame that's it's not so widely spoken about, like most illnesses that can't be seen. I'm glad you are talking about it and getting the message out. x

    Kate | A British Sparkle

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    1. It really is a shame that this kind of thing isn't talked about much, there are so many invisible illnesses out there that need more awareness, I'm hoping just talking about my experience will help people to realise that a lot of people are suffering in silence and not to just judge a book by its cover x

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