Hi there, spoonie-followers. Merry Christmas. Luckily, my pain is very mild today, it’s a more stiff, groggy sensation with the odd aching throb around my left elbow (who knows why the joy of fibro is its mystery pains).
Sorry for my lack of updates recently, and I promise I will be more productively on point from now on. Unfortunately, I had to go under the radar for a while due to some privacy issues. Now things seem to be settling down, I deemed it time to get my websites back up and running.
Today is Christmas day. If you read my other blog post BPD & Me you will be aware of my diagnosis–the night before Christmas and all through the house, there wasn’t a sound, not even a mouse, because Charlotte was in a shell shocked state after a psychiatrist told her she had EUPD also known as BPD, scaring away all living organisms in a five-mile radius.
The holidays can be a hard time for people suffering from chronic illness. The fatigue leaves us too drained to complete all the additional tasks. For me, I sacrificed wrapping this year. Everybody got presents but none were wrapped. By Christmas Eve, I was out of spoons. When you’re out of spoons, you can’t force yourself to do anything, if you do, you’ll pay for it with a flare-up the next day.
Some people do instant Christmas dinners. Don’t expect a spoonie to cook you a three-course meal from scratch.
Others go to family homes where their relatives are responsible for the hosting, cooking, activities and stress.
Some stay at home with their spouse or pet, to absorb the quiet.
Do what makes you happy.
I’m a firm believe in emotions impacting the body. I’ve always sensed that when my mental health is poor, it impacts on your physical health. Whether this is a ripple effect such as over/under-eating due to mood, over/under-exercising, neglecting personal hygiene or flare-ups in a chronic condition, mental health directly correlates with our physical wellbeing.
My GP was not aware of any schemes or bursaries/funding for hydrotherapy or exercise memberships which are proven to be beneficial for sufferers of fibromyalgia.
After doing my own research, I found an organisation called connect health in Milton Keynes that helps disabled people and those with chronic illnesses access exercise therapies free of charge.
Due to the fact I am relocating in 9 days (and counting, so excited to move in with my boo, the good mood has boosted me in so many ways), I looked online for an alternative scheme in my new area. I found such an option called the iParis scheme with Life Leisure where you can self refer for exercise therapies (if locally registered with a GP or a local resident) whether it is in the gym, swimming pool or with a trainer. It can take three weeks for them to process an appointment post-application but they promise the team will contact you to update you within five working days of submitting the application.
Recently, I’ve not had as much grief with my hips. Usually, they swell a lot when I walk and I had to use a walking aid, my kick-ass cane, but the last week or so I’ve been walking without assistance and without any swelling. It’s small wins that get me through the day.
People have been so kind and helpful with my move too, it’s taken all the stress off leaving my body far less tight (although still tenser than I’d like) than it would be if I had to lug my own furniture around or do 2+ trips from the south-east to the north-west.
I have secured university funding through the DSA (disabled student’s allowance) scheme and had an assessment where I was offered a brand new laptop for £200, software for speech-to-text, tinted screen software, reading software, a mental health app and a mental health mentor on a weekly basis in my new postcode area. That, added to the referral for rheumatology I’m waiting to attend in March, gives me hope for the future. Things see to finally be falling into place after a year, or more, of struggling to get by.
To manage my fibro better, I’m applying for lower hour jobs such as Teaching Assistants, Cover Supervisors and trainee teaching roles in Manchester for primary, secondary, grammar, and special needs schools. The constant on-the-go role helps keep my joints loose, and I enjoy teaching so much the lack of stress takes the edge off my normal working day, say comparatively in an office…
I’m still on loads of medications. I’ve cut back massively on Tramadol and Cocodomol. I still take Naproxen and Omeprazole if I have eaten. I still take Amitryptline daily and now Sertraline too. Mostly, I am back to using heat rubs, muscle gels, CBD oil, tiger balm, swimming, baths, massage chairs and yoga/stretching to manage pain.
You have to enjoy the small things in life to see the good. I’m so thankful today someone gifted me a telescope, so I can watch the stars in my new garden with the person I love. No better pain relief than that.
I hope everybody else had a magical Christmas, and those who don’t celebrate Christmas are surely enjoying the peace and quiet.
Until next time.