I cannot believe that it’s 4 months or so since my last post!! What has been going on? Have I been ill/away/recovered?
None of the above
I have just been very busy and very tired!!!
And by that I mean normal tired on top of my ME fatigue. (A rare thing!)
The reason for this?
A new Labrador puppy, called Rosie.
We knew that in getting a new puppy the first few weeks/months would be hard work. I think I’d just forgotten about how much!! But I wouldn’t change a thing.
Taking on such big responsibilities when you have a long term illness is not something we undertook lightly. In fact we have planned for this for a good 4 months over the summer. We had an opportunity and decided to take it. I’m a big planner and so everything was sorted and in place and the house puppy proofed. All preparations to ease the way for me, and certainly having Andy working from home was a big help.
It also became apparent that my illness and physical stamina have become worse since we had Ludo 7 years ago. I can only reason that this has been due to the pandemic lockdown, having had a fall with the very severe consequences of sciatica and immobility which were largely left untreated for 6 months. And then all the problems of having a knee replacement which was then re-done a year later!!
Absolutely horrible and as I reflect on it now being a year since that second surgery I can feel that I have a lot of work to do to try and regain my stamina and endurance and ability to walk more than a few yards without assistance.
Unfortunately, there is no support available on the NHS for people with ME, and other than seeing my GP, who is only interested in the here and now, and keeping me functioning, rather than some months long plan to become more active and independent.
It’s just down to me.
And while I could find some support in the private sector, one has to consider costs and viability.
Things are afoot and change may be happening in the future for people with ME and the “NHS Delivery Plan for ME” currently being worked on by the Government and Charities.
For too long PWME (people with ME) have had little or no specialist healthcare on the NHS. But with the publication of the 2021 NICE Guidelines for ME, this was supposed to change. But in a cash strapped, pandemic weary NHS, this has just been ignored, until work by various organisations and interested parties on behalf of the ME community, resulting in the NHS Delivery Plan. Work is ongoing.
But these are my thoughts on the current state of affairs and what needs to happen.
“There are very few ME specialist doctors across the NHS. If the NICE Guidelines are going to be implemented and , be effective, we need at least one ME doctor per health authority/ hospital and community in order for patients to access care from a medical professional (& provider) who understands their condition. And supporting that Doctor there needs to be a dedicated team of health care professionals including nurses, physiotherapists, dietitians, counsellors and pharmacists looking after these patients. Currently GP’s have nowhere to refer ME patients to, so everything falls apart at this first hurdle. And for the severe ME patients who can’t travel to see a doctor/ healthcare provider each provider needs to provide a service that goes to the patient at home. Currently ME patients pay hundreds of pounds to access care in the private sector. Some of which is regulated and some isn’t. The time has come for PWME to have good quality healthcare (regulated and managed) on the NHS. And not be left hanging, with a GP who may or may not be understanding or sympathetic and who might be disinterested or might be willing but unable to provide appropriate ongoing care”.
Which comes back to little old me, here, wondering how I can improve my own life and situation. I certainly have plans that are coming into place. And I do have a GP who sort of “gets it”. But the onus is on me.
And I’m starting 2025 slowly pacing myself to gradually introduce walks with puppy Rosie.
Pacing means building up in very slow increments, but that’s ok.
The important thing is to keep going, understand your body and adjust your goals accordingly if you need to.
So, Happy 2025 folks, and I will keep you posted!
No comments:
Post a Comment