Boxes Are Everywhere!

Well, not this morning! As I type this blog…one of the last ones on the computer in my former sewing room, it is pristine. Just look…

I did all that…YESTERDAY! Including helping Cookie Monster carry a massive desk up the stairs to his office.

Now that may not seem all that special to you. And honestly, a couple of months ago it would not have seemed like much to me either. It is one of the smaller rooms in #HomeCrazzyHome after all.

But then along came RA. Rheumatoid Arthritis. My world and all those expectations we all have came crashing down around me.

You see I spent Monday and Tuesday in tears, arguing with my GP and the local NHS board about my referral to the specialist I need to prescribe me the drugs I must have to start getting better…not just the ones that are supposed to make the pain better. I spent Wednesday in bed because the pain was so bad.

Honestly, I have not had a pain-free day in months. At least three or four days every week, I struggle just to take care of PanKwake and feed Cookie Monster. Cleaning the house has become start and go…bare minimum. Actually getting more organizing done and this place in some kind of real order out of chaos had become nothing more than a fond memory.

I was waiting…

Waiting Place

In this case…once again…waiting for doctors…specialist…the NHS to come and save me.

Yes, I was doing all the self-care I could find. Supplements. Vegetarian, well pescaterian, diet. Resting loads. And of course, trying with all my might to maintain a positive attitude.

Yes, this was not autism or mental health. It was a physical illness with tests that can definitively say whether you have RA or not. Medicines that can actually put you into remissions. It was a true illness rather than neurodivergence…another way of thinking and being. But still…

No One Was Coming To Save Me!!!

Then in desperation, I tried something different. Like all those pills and giving up my beloved meat were not ‘different’ enough.

I went to an acupuncturist. Because is all my educating myself about RA…all my research and reading…acupuncture was the one alternative therapy that had a bit of research supporting its effectiveness in RA.

To be clear…I did not expect much. Honestly, I went more for my mental health than anything else. I needed some sense of control…like I was doing ALL I could even if NHS was not.

And when I got there…it was not as bad as I expected. The needles did not hurt the way it does when they draw your blood. And laying there like a pin cushion in low light with soft music playing in the background…was not too bad either.

I could feel something when she started sticking me. When she took them out, I felt a bit better. But walking home…up hill…I knew I had RA. Thing was I kept getting better. And by Friday morning…I was not pain free…but I was better than I had been in MONTHS!

105I have been pushing myself…and PanKwake in her buggy too. Yesterday, being a real test. And while I really felt it last night, it was nowhere near as bad as it had been on Tuesday or Wednesday. I took my handful of supplements and pain killers and went to bed to rest.

This morning…I am not back to where I was Friday but I am still massively better than I was before. Good enough in fact that I am tackling turning the utility room into my new sewing room. Including more heavy moving.

I am definitely seeing the acupuncturist again this week.

Am I recommending it for others? No, I am not there yet. Yes, I have been stunned with the results. Cookie Monster’s scientific, show me, engineer brain even more so. He keeps feeling my arm and wrist. Checking for the swelling that he felt there before. And each times he shakes his head and is speechless.

As I told him, I cannot even dismiss it as psychosomatic because the results so far exceed anything that I hoped for. Honestly, this is where I thought I would get after six weeks or three months on the ‘right’ drugs.

But I am still reserving my opinion…waiting for more evidence. See what happens…how long this lasts…how far I can push it. And how future treatments go.

What I am saying is…

Those same steps I gave you for being a parent to your autistic child…work for other things.

Even physical illness like RA.

Remember…

  • No One Is Coming To Save You…So Stop Expecting Them To!

  • So Educate Yourself…

  • Think Outside the Box…ALL boxes…

  • And Don’t Forget To Help Save Others Along the Way…

It is advice that works on so many, many levels…even with your health.

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