ME Awareness month. It's fair to say I view my ME diagnosis as little more than a death sentence without the death part. Extreme view? Try living with it. It's not until I found Me association that I got connected to other people like me. Exactly the same presentation, same symptoms, same experiences. I was saved. This group achieved what no GP, no friend or family could achieve....acceptance, acknowledgement but also hope. I was bedridden, crying, in pain, overwhelmed and if I'm honest, praying for a quick death. It's that bad. But with a very kind GP (following a complaint on my previous one), I was treated for my pain, offered sympathy and put in touch with South Coast Fatigue. Little by little I came back from the edge and began to look at what I could do. It's a huge massive adjustment but I did it. My family played a huge role in this. Xander cooked every night even though he had his own substantial health issues, Lewis stepped up and helped lil bro Christian with school and snacks, Shannon washed me, bathed me and did my hair and my husband made everything possible and brought me anything he could think of that might help. My parents were on the phone all the time listening to me sob and letting me know they love me. And my friends, Dawn, Suzanne and Jo especially keeping my spirits up and listening to me moan. I owe them all everything. Cue pup pups arrival after a year of languishing in bed and life became bearable. It's absolutely fair to say he has done miracles, you all have. Thank you for making life bearable. #meassociation #southcoastfatigue #familyfirst #cockaliersarebest #pwme #meawareness #friendsforever
Well on top of my usual aches and pains I had to save some spoons for a consultation over the phone with the southcoast fatigue clinic. I was diagnosed with cfsme in 2019 by my neurologists but have only recently been referred to a specialist clinic by my gp to help me manage it. Well and exhausting almost 40 min phone call in the dark later and I was in much need of a 3 hour nap. I was quite disheartened that they said they couldn't take me on at the moment as they felt that because I was still having input from the chronic pain clinic and neurological and urological input that a plan to manage the cfsme would probably not be beneficial until my other problems were under control....I literally could have cried. Just as you think you are getting somewhere with health professionals it's like getting a massive kick in the teeth...it just seems like I'm being passed from pillar to post and nobody has the answers they just want to throw meditation and medication at you along with a leaflet and send you on your way.....well the PEM after that was so overwhelming I'm hoping it doesn't last too long. #southcoastfatigue #cfs #cfsme #me #myalgicencephalomyelitis #referral #notjusttired #exhausted #pem #neurological #neurologists #urological #urologist #chronicconditions #chronicpain #chronicillness #assessment
Starting therapy with South Coast Fatigue to try and get through these horrible CFS symptoms. They have been really lovely and super supportive so far although I have months to go yet. You need a GP to refer you but they are great source of advice in meantime. They also cover a variety of conditions, not just CFS and use a huge range of professionals. Check them out at southcoastfatigue.co.uk š„°š #southcoastfatigue #longcovidphysio #longcovidrecovery #cfsme #longcovid19 #healingjourney
Finally! After years trying to find out why Iām constantly so exhausted , I have not 1 but 3 appointments. Feel hopeful for the positives coming my way! #southcoastfatigue #mindfulness #dietitian #hope #chronicfatigue #ME #fibromyalgia #finally
Had my first occupational therapy session today with #southcoastfatigue they have written me a plan to help with my #M.E #chronicfatiguesyndrome so things are looking good and they have given me lots of tools to help myself daily so I'm hoping some of these will make a difference. #fingerscrossed