I haven’t been writing much lately, I guess I’ve kind of been in my own bubble. With my pain and fatigue worse I’m having to do less, and when I do activities they bring on intense symptoms or result in longer recovery. All in all, there’s not been a lot to write about!
I’ve been quite frustrated by this the last few weeks. I felt I’d been doing quite well, and I guess in a way I still am. I’m maintaining control over my mental stability and I’m not pushing through pain and fatigue and sending myself into full flares. This is probably quite significant given my baseline has dropped, and I am genuinely happy that I’m listening to my body.
But it’s made my world quite small and isolated again. I can only manage one social interaction every 2-3 weeks, and with a shorter duration. Even so, these are taking several days to recover from which is particularly unusual.
Despite this, I’ve found I quite enjoy doing diamond art. And I can manage a few short sessions of this most days, providing I haven’t done anything else that day or the day before. And it doesn’t matter that my tremors make me put the gem in the wrong spot, I just shove that little sucker across to where it was supposed to land. It’s quite soothing and has the added bonus of being good physiotherapy for my hands.
I’ve also had a long assessment for a residential pain clinic, that’s been a few sessions spread across the last threeweeks. Initially, after the first assessment, I was feeling really positive. I had a 5 page write up the following day, and they actually listened. I really thought I was on to a good thing, they said they’re often treating people with FND, POTS, CFS/ME, chronic pain and hypermobility.
They think I have neuro inflammation, along with chronic primary pain, and believe there is a link between this and my immune system. I can’t argue with them, I think they’re probably right.
But it feels like that good opportunity has come crashing down around me. They think I’d be a good candidate for the program, which is four weeks residential, but then in the final assessment they explained what the program would look like. Each day would consist of two strength and fitness sessions, a psychology session, an occupational therapy session and a health and wellbeing session. Each session being an hour long, and spaced between 9am – 4pm. 5 days a week, for four weeks.
That’s about the point my hope crashed down, because right now I couldn’t manage one of those days if it was spaced across a whole month.
On Wednesday, I took Riley to a private field; I was sat down, he was running around like an idiot with a rocket up his ass. After, thinking I felt ok, I went to the pharmacy which was only a five minute drive. I parked right outside, took my stick, and then my symptoms kicked off. All the symptoms I’ve not been dealing with because I’ve been deliberately keeping life small so as not to trigger them.
I walked in shaking like a fucking rampant rabbit, while my head and arms were twitching like someone was pulling invisible puppet strings. I got what I needed and, knowing I wouldn’t be well enough to finish my errands the next day, I went to the pet shop to replenish Riley’s treat jar. By this point, I looked like a clapped out generator that should have been decommissioned a decade ago.
I got back in the car and realised I couldn’t safely drive home because I was shaking so violently I couldn’t hold my foot steady on the pedal. But,
I knew in the moment I had to distract myself from the symptoms while taking a little rest so I could make the drive home. I drove, not very smoothly, to the other side of the car park and into the McDonalds drive thru to grab something to eat – the distraction.
After 10 minutes of slow munching, I was finally able to drive home without my car kangaroo hopping down the road.
I’ve been fucked since. There was a minor stressor yesterday, Thursday, which immediately brought on another tremor attack as my nervous system is still so upset.
But somehow, others believe I can go from this into a one month program where each day is full time mental and physical activity and stress. If I could manage that, I’d be fucking working. I can’t even sit on my arse in a field for an hour and pick up medications.
I guess I really got my hopes up, after five and a half years I was finally being offered help. I was even willing to accept a month without my usual routines, Riley and home comforts. They knew that I can’t wash and dress daily, that often I need support with bathing and that I’m not considered “independent” with my medication because I have to rely on alarms to take medication and help filling my pill boxes when they need filling on a day my hands are being difficult.
I really struggle with a lot, and it’s taken me 5 years to reach this point of activity level. And it’s been 8-9 months of that activity level getting lower and lower again. Yet their answer to my concerns was that I’d have six months to build up to being physically and mentally active for seven hours a day, every day consistently, washing and dressing daily too, before the residency. I’ve spent 63 months trying to achieve that and my assessment for the chronic fatigue clinic I’ve finally had sent won’t be for 26-28 months. 2-3 years!
This probably came at a bad time where I’ve been feeling a little fed up of barely seeing my friends and family. The help I finally thought I’d be receiving is more likely to make me bed-bound again if I accepted it in my current position. It’s a bit of a blow and brings up previous frustrations I’ve worked hard in therapy to process. The loss of a normal life, the ability to work, the ability to exercise daily, the ability to compete at weekends to earn more medals and titles. The ability to walk normal and for more than a few hundred metres. What I’d give to actually walk Riley, and to have been able to confuse my hikes with Bella while she was still with me. There’s so much loss that’s been brought up because the “help” I’ve been offered, and assured is possible, completely invalidates my very real restrictions.
To cut a long story short, I don’t think now is the right time for me to accept that help. However, I’ve sent an email to my FND neurologist for their input. Given I’m waiting for neuro-physio and the CFS clinic referrals still, I can’t ask them for their professional opinions. Hopefully I should have something back next week so I can give the pain service a definite answer on whether to postpone my referral or not.
Otherwise, not much has been happening. I’ve been exploring the idea of making wreaths as a way to generate some kind of income to help pay for the supplements I rely on to keep me from being bed-bound, my pain keeping my up all night and having major MCAS reactions. Currently I’m relying on help to pay for these, which I really hate doing. It’s bad enough not being able to work, not being able to be self-sufficient too to manage my health is just another kick in the teeth. So, if anyone has wreath making experience, I’d love to learn! But I’ve also got a YouTube library of tutorials to work through once I’ve saved the money to buy materials.
Despite all of this, I’m still proud of where I am. I’m a strong woman who continues to refuse to give up, who continues to hope and dream of ways to find improvements in my health, how to generate an income and who simply continues to climb any obstacle in my path.
The pain residency may not be right for me now, but when I think I can cope with it I will do it and go into it like I fucking mean it.