I was diagnosed with Ankylosing Spondylitis in 2014 and since then life has been a rollercoaster. There have been positives as well as negatives. Ankylosing Spondylitis (AS) has changed me mentally as well as physically. I was then diagnosed with Osteoarthritis and Fibromyalgia in 2017. Over the years I have found the best help ever was talking to other Spoonies like me so I wanted to share my experiences to help others. Any advice I share are personal experiences. I've never blogged before, this is a place where I can clear my thoughts but hopefully it will help you too.
Went bowling this afternoon and was so much fun, not been in ages but the best thing is it proved how far I’ve come and beating my anxiety, it angers me that I have missed out on so much over the past years but I know I have lots to look forward to. I know I will be in pain tomorrow, I know I’ll be exhausted but I will not let this bloody illness run my life. Screw A.S and fibromyalgia, chronic fatigue can go to hell and take osteoarthritis with you!
I found this playlist some time ago on Spotify Pain Relief Playlist and think it is really great to use after a stressful day, during a flare or just to meditate. I hope you find it useful.
Also on the right of my page is a widget which takes you to my Spotify page or click here I’ve made a few playlists one is to motivate me to get up and move, either to do my exercises or just have a little boogie, another is songs I feel show how I feel and suffer, some are suggestions from fellow spoonies.
Our lives are draining enough as it is, am I right? The pain, the stress, .the sleepless nights, pressure from friends and family. What about work? Are they supportive? Are they genuinely supporting you? I’m not trying to make you doubt anyone in your life. Remember my blog is an outlet, a release for my suppressed feelings and emotions. People I thought were supporting me at work have stabbed me in the back and I allowed them to ware me down to the point of nearly breaking me mentally, but I am stronger then that. I was drowning in my own tears. I doubted myself, I was so confused. What had I done wrong? Why did I suddenly feel like the one to blame?
I have never felt like I had to prove myself to anyone that I am able to do my job, until I was diagnosed with Ankylosing Spondylitis that is. Nobody put pressure on me and made me feel like I had to, it was just me. For the past four years I have pushed myself and worked harder to prove nothing has changed. Maybe I was trying to prove that more to myself then work, it was hardly a surprise, I was scared. I did not know what the future held for me. I did not know how understanding people around me would be. I only initially told management and two people I work with and I told them I did not want to be treated differently and I would not start saying I could not do things because of my disability. I’m not one of those people who uses these kind of things to my advantage to get out of doing things. I just adjust the way I did things in order to carry on. I thought I was doing ok, I thought everyone understood then when I had a flare I couldn’t do certain things, but they still got done. When my fatigue was bad they said not to worry when I apologized for not being as active. How wrong I was.
So intially as I said I felt supported. It was suggested I log all I do in a day to see if anything at works triggers my pain and fatigue flares but it got to the point that they literally wanted to know my every move. I now felt checked up on and this comment wasn’t received very well they said they didn’t know how to support me, that I don’t want people asking how I am!!!!!! Lies. Anyway I won’t got into details but after this comment I was being treated differently from my department. They were snappy with me and there was a very horrible atmosphere. I was actually shouted at on one occasion infront of a colleague who sat there and said nothing. This is when I decided enough was enough and reported this person for bullying and descrimination due to my disabilities. I never thought I would have to use those words.
Three months later and I still have no idea what this guy’s problem is.
Long story short I broke, I had to go to doctors and get signed off for two weeks. This person is playing with my head, it’s sick, how can I not think he’s desciminating me due to my disabilities when he won’t talk directly to me?
The summer holidays are nearly over. I can already feel my mood is changing.
Have any of you any advice for me? Have any of you been through anything similar. I’d be grateful.
Jennifer Brea is about to marry the love of her life when she’s struck down by a fever that leaves her bedridden. When doctors tell her “it’s all in her head,” she turns her camera on herself and her community as she looks for answers and fights for a cure.
I don’t normally do reviews but I had to tell you about this film. Even as someone that suffers from Chronic fatigue I can’t imagine or at least I couldn’t imagine, what someone with CFS/ME goes through. Strange? No, because I know what causes my fatigue. My Ankylosing Spondylitis, Fibromyalgia, my anti-tnf injections, b12 deficiency they all cause my chronic fatigue but for me it got worse after a bad spell of bronchitis. I had to fight to be listened to when I told my doctor my fatigue was worse, my body felt weaker. Do you know a virus can stay in your body for up to 10 months? Neither did I! He eventually sent me to see a specialist to see if I had Chronic Fatigue syndrome and confirmed that I don’t.
Anyway, Unrest is a fantastic film that has certainly opened my eyes to CFS/ME. Imagine being perfectly healthy then suddenly feeling so I’ll with no explanation. Imagine being told my doctor’s there is nothing medically wrong with you…..but look at you, you can’t walk without having to sit down frequently, noise makes your head feel like its going to erupt, your muscles feel like they are wasting away and are so weak……but yet they can’t find anything wrong!
Jennifer’s battle is one fought by many around the world. I think her campaign is fantastic and this film really makes you feel the suffering, frustration and determination she has to fight. Please watch Unrest on Netflix and help raise awareness, more people need to understand that this illness is not in peoples head.
I’ve been writing a piece for a while now but working full time I never seem to have time to finish it. I think also because it’s a current situation I’m finding it very hard to write I’m going through a very difficult situation tight now. Chronic fatigue is really a battle right and this heatwave is making it worse, I have no energy and absolutely no motivation. I will fight this difficult time! I’ll be back soon.