my healing journey : 01.03.2021 …

My Healing Journey : 01.03.2021 …

ME/CFS STEP Programme …

Today I have taken a big step to do something that I have wanted to do for so very long. What was stopping me? I’m not sure … be it stubbornness because I knew I was entitled to it through the NHS or just plain old uncertainty. Either way, I’ve taken the plunge and booked a place for myself, and my husband, on the Introductory Workshop, which is the starting point on the Step Programme run by the Yorkshire Fatigue Clinic; as a fee paying customer I must add. You will read a bit more about this when my ‘fortnightly catch up : 08.03.2021’ blog post is posted.

However, for your immediate information, I have wanted to do their programme for such a long time and finally, last year, I got a referral through my GP. But the referral was refused, by the Cumbria Clinical Commission Group (CCCG), on the grounds that my local surgery, via the familiar faces team, could provide the same services. This turned out to be utter rubbish. I do have grounds to appeal, but I am simply not well enough and so I am paying for a specialist ME service that is available through the NHS and that I am entitled to receive. Bloody ridiculous and utterly bizarre too!

The STEP Programme

The programme I will be doing with them is known as The STEP Programme (see below for information taken from the Yorkshire Fatigue Clinic website), and is used in conjunction with their understanding of ME/CFS using the dysregulation model.

The STEP Programme focuses on helping you to understand the things that can affect your symptoms.  It then takes you through stages of stabilising and gradually increasing energy and activity levels.  A qualified therapist will assess your needs and how you can use the programme to optimise your recovery.

I sincerely hope to understand my illness better and accept my limitations more too. It’s been a very long time coming considering I first got ill in 1984.

Introductory Workshop …

The overall programme, known as the STEP Programme, will start with the introductory workshop. I have copied the details about this workshop below (taken from the Yorkshire Fatigue Clinic website), but will write up my own interpretation once I have completed the workshop.

Before starting a rehabilitation programme it is helpful to understand why these approaches are used and what the programme will involve. At the Yorkshire Fatigue Clinic we provide an Introductory Workshop that gives more information about CFS/ME and other chronic fatigue conditions, and our approach to therapy. You can attend the workshop before or after your individual assessment with the clinic. This will help inform your decision of whether you want to commit to the programme.

If you have people who will be supporting you through your therapy, it is also helpful for them to come to the workshop so that they can be more informed about your health problems and how to manage these.

My Healing Journey …

I know this title smacks of toxic positivity but I have no idea what else to call it and I do want to document my journey. So for now, this is the category and title I will use to document, and for you to follow, this journey through.

Just to add, it’s not such a far fetched title as I do have hope that one day I will heal and that journey will have to start somewhere, and so it could be here. I also believe that if I am registered with a specialist ME clinic then I will be able to avail myself of targeted medicines and treatments as and when they become available.

That said, I want you to know that right now, in 2021, I do not believe there is a cure for ME and I know that I cannot heal from ME right now. Only 5% of people who have ME go on to recover fully, and these people are never found in the long term ME patient group. Presently, scientific expertise interest regarding ME is very lacking but the knowledge of a few dedicated and sincere scientists is progressing exponentially and so I do have hope that the future may hold healing for us all.

Nevertheless, I can work with my body and for myself, to consolidate where I am right now, which will be as good as healing because I am consistently making myself sicker and it needs to stop before I kill my self. This is not a suicide pronunciation, this is down to pushing my body so much that it can no longer go on.

KAROSHI: (in Japan) death caused by overwork or job-related exhaustion (in the case of ME, our bodies are so shot at that we push it over the edge and die)

So today with this post, I will start my journey.

Can You Help With Costs …

Please go to my ‘fund my healing journey …’ page to donate.

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 fragmented.ME xXx