I am currently in the process of sorting my life out.
This is a process, I’m not perfect ~ far from it and I know that with some changes I can improve my life, my outlook and my prospects.
I have a collection of invisible chronic illnesses which have changed my life and my ability to do the things I used to love to do. I refuse to give in to them and will not allow myself to withdraw from life and hope.
Yes, I have to adapt, change and rethink in order to accomodate what can or cannot be done. It is a ongoing and evolving process. I like to have answers to my questions regarding my health and options of what can or cannot be done to improve my circumstances.
Step one was to sort my weight out. Different medications over the years have caused increased appetite and increased weight. This was left unchecked for too long and now I am having to stop and reverse the damage.
I am using hypnosis to help me lose the weight and it is really working. Plus the daily psitive affirmations are helping my mindset, encompassing everything in my life and not just my weight.
Today I saw a new Rheumatologist, my last one has retired. This appointment was to help me clarify which illnesses I actually do have and which I don’t. My GP has written I have Fibromyalgia and my old Rheumatologist said Hypermobility Ehlers~Danlos Syndrome to me but only wrote Hypermobility in my notes. My question is do I have Fibro or HEDS or both. I know for sure I have multiple allergies, TMJ, Diverticulitis, Depression and ME/CFS, they are confirmed several time over but the Fibro and HEDS diagnoses are not so clear.
The reason for the Rheumatologist appointment is for clarity, it is me wanting to find out what is causing the pain in my joints and muscles. Once I know what it is I can look to find ways to address it without harming my health any further.
As far as I am aware all my conditions are not cureable, that the only help is to have differing symptoms looked at and treated as and where possible.
My TMJ is helped by wearing a mouth guard at night to keep my jaw in alignment. On days when it decides to lock I have baby food, eating with a teaspoon and anti~inflammatories until it eases.
My depression is treated with the antidepressant Amitriptyline, I am aware that doctors try to use other antidepressants and like to avoid Amitriptyline as apparently it comes with a high risk of suicidal thoughts. For me though, after trying all the others and discovering they were ineffective at treating my depression they finally agreed to give me Amitriptyline. I am on it long term because with the anti~depressants the depression wellies back into my life. I have suffered from this since my late teens
The Diverticulitis is treated by me taking daily sachets of Laxido 2~3 times a day, it keeps my stools soft (tmi?) and mobile and prevents them stagnating in the pouches and becoming infected. Thankfully by preventing contipation through taking this medication I have managed to stave off further, very painful, flare ups and not needed anymore antibiotics.
I have multiple allergies, to quote the Rheumatologist reading my hospital records ~ “ah, you are literally allergic to almost everything then!” These allergies are managed by clearing out the house of almost everything, taking daily antihistamines and using topical steroid cream. Last ditch treatment if allergy rashes don’t go is steroids.
My ME/CFS is not treatable as such, there is no cure. What I can do to help myself is to focus on planning, preparing and pacing. If I limit my acitivity in order to not crash and bring on a relpase and plan my days I can try and avoid the boom and bust cycle. I have to admit though that I am pretty rubbish at pacing ~ I still have a lot to learn and must acknowledge that there at times when crutches are necessary in order to do what I want to do. Accepting the use of mobility aids and supports is a tough one for me, I feel like I have failed in managing to keep my body healthy and strong. However, with the use of the hypnotherapy, I am not only losing weight but I am also learning to love and accept myself and my limitations. It isn’t my fault, my life could be so much worse and I am grateful for what I do have. This picture helps explain energy use for us spoonies ~ that we have to plan how we expend our energy in order to keep ourselves balanced to be stable between the perilous boom and bust cycle.
My new Rheumatologist was lovely and exceptionally thorough ~ a full 2 hours for the appointment instead of the 1 hour allocated. I was poked, prodded, examined, asked to perform numerous tasks (of which some I failed spectaularly). The end result, yes I am hypermobile but stiffening up but more importantly I am officially diagnosed with Fibromyalgia, bursitis of both hips, inflamation and fluid retention of ankles, needing Achilles heel treatments as very tight and sore. I also have weakness in one side and am more painful on the other ~ additional pain on the one side attributed to compensating for the weak side ~ oh and also I have flat feet!
Long story short ~ I am being referred for specialist physiotherapy treatment over the long term:~
- First working on relieving and treating the bursitis of both hips and Achilles in both feet. Apparently there is some treatment they use with ultrasound which has replaced steroid injections ~ so will update on that once I know exactly what it is and how it works.
- Then working on the weakness in the one side.
- Once the weak side is equal to the other side to then work on both sides of my body.
- Strengthening my core, glutes and something else (I forgot!).
- Wearing arch supporting trainers ~ I kid you not, she told me to throw my footwear in the bin, buy two pairs of arch supporting trainers which don’t hurt my Achilles (so high tops then) and wear one around the house and the other for going “out” in ~ oh my how sexy will I look? Walking barefoot around the house is apparently a no no, I have to wear my “at home” trainers whilst at home.
On the plus side she was uber impressed by my calf muscles ~ they are sold like steel and she kept prodding and laughing at them saying how cool they are ~ I aim to please. It most likely that my calf muscles have developed due to compensating and taking all my weight somehow by the way I walk (I roll my feet in too).
Anyhow ~ in the near future I shall be meeting and becoming very familiar with a physiotherapist ~ poor soul.
Sometimes its good to know what is wrong, to have your pain validated ~ I am not imagining it. I now have hope for eventually have less pain. I apparently may never be pain free but at least it will be reduced to improve my quality of life. It will take time and I have to take painkillers before each session in order to be able to take the treatment without having to tap out.
So the future is brighter with the knowledge that things can be done. Pain relief can be tweaked, inflammation eased, fluid removed and weakness strengthened.
This deserves some celebration and my lovely Dave has bought some Chablis for me tonight.
My husband was with me throughout the appointment, supporting me, helping me explain due to t he doctor due to my cognitive issues as I get muddled and listening so he can remind me when I left the appointment what was said.
I hope this weekend brings you all something good, something positive. I will be reading up on ways I can try to ease pain prior to treatment starting and celebrating the small things, the good things, the important things.