Hey guys, I am so sorry I haven't been posting for a while. I have been away on holiday and when I came back my laptop screen is broken so I can't use my laptop. So here I am on my phone!
I thought I would write a post about what it's like living with a chronic illness, or more importantly, what it's like living with Fibromyalgia. I am going to talk about my personal opinions regarding my experience with Fibro so far, and I know that Fibro effects each person in a different way. Some things may be a little dark, but I will also talk about the good things I have found since being ill. So here we go and thank you for joining me on this wild ride! Just letting you know this will be a long post. I just feel like I need to get this all off my chest.
So I have had Fibromyalgia for 3 and a half years, before I was ill, I was a bubbly and outgoing person who loved her job being a nursery nurse! It all started with me getting a herniated disc in the lower part of my spine. At that point it was the worst pain I had ever been in. I had never been in hospital before this point. I ended up having to take a lot of time off work, which changed my relationship with my managers, one of them even thought I was lying. I had countless X-rays, MRIs and tests to find out why, but to no result! Then one day the doctors told me that they couldn't operate because the herniation was too small and would end up causing more damage if they operated. This really shook me up, I was on so many medications which knocked me out and turned me into a zombie, but didn't get rid of the pain. I was miserable and it was one of the worst points in my life.
About 6 months after the accident, I started getting other symptoms. The pain started to radiate all over my body. I was exhausted by the slightest bit of exercise. I started getting excruciating headaches and I started becoming weaker in general. At first I thought it was side effects from the medication. But I went to the doctors and we hit a wall. They didn't have a clue what was wrong with me! This is one of the problems I have found. Doctors don't think of you as a person with feelings. There have been times where I have been sobbing and could barely get out of the chair without help, and the doctors just stare at me and do nothing. They don't think about how these symptoms affects your daily living. But I've learnt to deal with people looking at you like your crazy.
In June 2 years ago I woke up at my friends house in excruciating pain, my face was damp from where I had been crying in my sleep. Sobbing I bottom shuffled down the stairs and crawled onto the sofa. It was 2am and I didn't have anyone to talk to and I really needed help. I decided to call 111 which is a non-emergency NHS line. I told them what was going on and they decided to send a paramedic over, and told me to wake up my best friend and get her to sit with me and wait for the paramedics. Which I did but it took me so long to get back up the stairs. The paramedics came and checked me over and gave me gas and air, which really helped to numb the pain, but for anyone who hasn't had gas and air, it doesn't last long at all. The paramedic decided I should get checked over at the hospital and told me to call my mum and get her to meet me there. Calling my mum at 2.30am was a horrible thing to do. She was so scared but she told me she would meet me at the hospital. I ended up being there for 6 days and it was horrible. I was on morphine to try and numb the pain but it didn't last long. I would wake up crying every night in agony and the doctors didn't know how to help. On one of the last days a doctor came to me and told me there was nothing more they could do for me, and they had no idea what was wrong with me! This was one of the worst things I had ever heard. I didn't know what to do, but in the end I got over it. I realised I had to get on with my life.
About 6 months of constant tests trying to find out what was wrong with me. I decided to do something that you should never do! I searched up my symptoms online, but it was the only other option I had! I had been to so many consultants. And every time they came up with something different, an arachnoid cyst, my pain receptors misfiring, everything. And for my House fans out there they even thought I had Lupus, I did have to suppress a laugh at that point. I found loads of articles about people like me who had been diagnosed with a condition called Fibromyalgia, I had never heard of it, but everything they were talking about was what I was going through! I couldn't believe it. I knew a lot of doctors didn't understand or even believe in this illness but I had to talk to my doctor about this. When I talked to her she said "no I don't think you have this illness, you just have to live with what you have" but I was very adamant that I wanted to see a Rheumatologist to see if I could get a diagnosis. And after some persuading she referred me to see a rheumatologist. And when I did I finally got an answer, I did indeed have Fibromyalgia. But I had so many mixed emotions. I finally knew what was wrong with me but the condition I have has no cure and not really many treatment options. I spent so long researching this illness to try and find something I could do to help my illness without having to rely on heavy medication. But to no avail.
And now we come to the present day. I have now been officially diagnosed with Fibro for 18 months now. And still there has been nothing I have found to help my symptoms. I fully believe at least 50% of my illness is phycological because it certain situations such as being In a stress free environment or on holiday, my illness seems to almost melt away. I have tried and tried to figure out what it is that makes them go away but I have no idea! But I do have to say, this illness has made me a stronger person. I don't really take any shit anymore, and in the last 2 months I have started to find ways to live with the life I have. I have just started volunteering at a primary school. Which I love because I can finally work with children again. After my divorce, and moving back in with my mum has really helped my illness, I don't have as many flare ups, and I can manage a little easier. Also having the support from my family and best friends is really important to me. I know I can tell them everything.
I still have headaches, all over pain and fatigue, and I am also starting to get pain in my joints which is pretty common with Fibro patients. If anyone is having these symptoms, please go to a doctor and ask for help. It is so hard living with this, but every day I get a little stronger and understand this horrible, debilitating illness a little more.
Thankyou so much for reading this, this has really helped me get this off my chest. And I do feel better for writing it all down! Thanks guys and talk to you soon!
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