Today’s subject is very close to my heart. Everyone has fears, some maybe about spiders and some maybe heights. Mine is about my condition and if it get’s worse or what will happen to me when I get older. Being 32 and already having so many issues does play on my mind for what the future holds. Me and my husband have big plans this year to sell our house and take life in the slow lane and live on a narrowboat. This will not be without it’s complications though i’m sure. Going through locks and cruising will be difficult but together i’m sure we can achieve this!
Over the years I have watched myself deteriorate, at what I feel is an alarming rate. Starting with shoulder pain and now all over my body doesn’t bode well. I do have great healthcare professionals who are keeping a close eye on me which is positive. I also have been putting a plan into place to keep my muscle tones up to assist my joints too. Acknowledging the fact that I have issues was the first real step to getting the help I so desperately needed. Now coming up with a pacing and exercise plan is the next real step.
I did decide to leave work due to my health and I understand not every can do this. This has so far been the best decision I have made and a real eye opener as to how working such manual jobs really take their toll on my body. The plan now is to work on pacing, exercise and also raising awareness of the condition for others to discover. If I hadn’t of found the HSMA Charity, I wouldn’t be in the position I am today. Discovering their website with the amount of information they have really was the first step into discovering this world of hypermobility syndromes. It helped me understand why I am in pain, why I am so tired all the time, why certain vitamin levels are askew. The website also helped me understand my body internally, discovering that lactose is an issue for me and this was seemingly quite common. Upper GI issues were another thing I realised was wrong from reading the information and PoTs symptoms also. All these things going on with me, it felt like I was constantly herding sheep into a pen to find out what was the route cause of my problems.
So finally, I got the diagnosis I was after and things then started to fall into place. I was given CBT, hydrotherapy, physiotherapy, medications, diet restrictions and more to help ease my symptoms. Going forward now I have a much more positive outlook for the future that I hold. My family and friends have all been a huge support network for me too. I do feel extremely lucky to have those I love around me and understanding what I am going through. Some of my closest friends have been to support groups with me and this has helped them understand me and me understand how it affects them too.
Pre diagnosis, I would have said my fears, anxiety were so high I actually found it really hard to function. I was turning into a hermit, not wanting to leave the house due to worries of more pain and suffering.Now I have a more positive look on things. I can’t say that I don’t worry now but things are definitely more settled. I will venture out independently using my walking stick, crutches or wheelchair or none depending on the day I’m having. I do have to make sure of pacing, pain killers and heat are in order. I have to exercise each day to keep my muscles stronger to assist my joints. Sometimes I will cancel last minute gatherings if I am not well enough and I do get very bad flare ups still. I can have a bad spell and feel very low. I do have to ride through them and friends company is always a must. Cuddles from my family and my fluffy pup is always good too.
I still need help and assistance with things however, I do try and keep feeling positive. Smile lot’s and laugh often. It does help! Surround yourself with positive people. If anyone drains you ditch them! It sounds harsh but you will have enough on your plate without people zapping your energy levels further. Keep up with non or low impact exercise. Ask for help, please don’t suffer and push yourself. You will end up in a constant state of boom and bust and it’s extremely hard to get out of this pattern… I would know!
Anyway, I hope this post has been helpful. Any feedback is always greatly appreciated.
Take care of yourselves always