What a strange day?
I attended a support group meeting for people with my condition. Oddly it was at 9.30pm but my inability to asleep until the early hours, making that time impossible for me previously, is gone.
Probably temporary due to feeling stoned on the afternoons which is down to prescription drugs. Amlodopine being the culprit. The stoned feeling gives way to a strong desire to sleep. Very unusual for me as my late nights continued for years. Maybe having real trouble sleeping with Fibro is a rarity?
It was called, or the logos said… Fobromyalgia & Me. Well you have heard a lot about mine so I titled this one as I did. No names nor details will ever be mentioned ever. Unless of course someone wants to. Even then if I think this is a bad idea for one reason or another I would advise them not to do it.
The group was nice. The people running the show seem to be really nice. I was asked if I was recording… twice and once by email.
There is no desire for me to record and publish patients. So no nothing is going to appear here! Lol.
I have made it clear on here from the get go that I’m not even really interested in the pawns, or front line staff that fob you of with lies and excuses. No, I am after the ones right at the top who did this as well as those that allowed them to do it.
I was recognised by one lady and I explained that I spent a lot of time in a pet shop 100 yards away. She then remembered me from there and O explosives that the pet shop only moved to Baker Street half a mile away. Ten minutes or so into the meeting and a lady walked in I knew. She was the daughter of a lady I know I helped with for a time with her terrapins. We chatted and she was somewhat surprised I was there. I was completely blown away she was there! Lol.
There were about twenty or so people in the group and someone who works with healing stated she was relieved to see two men attend.
Depending on who the author is Fibromyalgia between men and women is 10 to 30 percent for men. Or in other words 1 in 7 or 10.
A healer did a group meditation type thing with some pretty neat background music.
Despite my long horror story, when I was asked to explain to the group my own experiences I kept it brief.
Later they found out a bit more plus I explained about that book that proved to be a godsend for me. Figuring out Fibromyalgia by Ginevra Liptan. When I explained that she had it while studying medicine to become a Doctor but kept it hidden from other medical students. The whole time studying too, everyone was interested in the book. Pens and notebooks appeared at points around the room and I was asked to spell her name by a few.
A lady from Acupuncture clinic in Winchmore Hill also explained what her profession was like and how it helped some patients with our condition.
The session was over three hours and late on in it I was asked what I had thought of the session. Being new and all. I stated it was a real relief to hear so many singular horror stories from others with the condition but that this statement sound wrong. Everyone said that they understood.
I heard some surprising things too and some confusing things. Done drugs were being used that are not only boot on my radar they are drugs I was very familiar with, like Citalopram.
If I was forced to bet it would be that this drug has zero affect on Fibromyalgia.
An interesting situation arose when the word ‘ damp’ was used as something we don’t do well with. What was interesting was that everyone takes about the summer and how much better they feel. This time of year I yearn so much for the sunnier and warmer weather. I think this is a misconception.
I myself love the Spring most of all followed by Autumn. Spring because I will feel better and can do things again. I like the Autumn because immediately before it will normally by hot, stuffy and humid. I hate this, I really do.
But as I stated to one woman there if O were to ask each of them about being hot and humid they would say they hate it. Loathe it even. I do.
There was some confusion over caffeine too so when I was asked what I thought O explained about caffeine and what happened with me and the Restless Legs Syndrome and Restless Arms Syndrome. I also explained that Ginevra Liptan was the only author I had come across who mentioned Restless Arms Syndrome and many other symptoms I have along with the Plantar fasciitis symptoms.
One lady asked for the blog address but I did not attend with a set of cards or leaflets with the details. I mentioned this blog but I would rather people become curious in their own time and ask.
One lady asked and I scribbled it onto a page on my Moleskine notebook, tore it out and handed it to her.
The blog and it’s various… events will be a lot to take in… once you realise just how many things there are within these pages.
Everything is here to back to what I say and more is coming. No one will find anything fabricated on here. Not even grossly exaggerated! Lol.
I was never going to lay down and be beaten the way I had been. So some years back I decided I had to plan to record every appointment and meeting and mount up the evidence.
Now wanting boy one or two but dozens of things and dealing with the public services this was always going to take a bloody long time… and then some.
The last set of so called support groups I visited were nothing like this. In fact they were not support groups, no one was asked to talk or tell each other what we had wrong with us. Each month several people would tell you a bunch of crap most average people already knew and then the latter half of the meeting they would try to recruit you to work for Chase Farm Hospital for free?!
I attended three of these. I only ever saw one other person again and most never came back. It was a pile of crap in all honesty. They got different volunteers to tell you how cool it was to work for a bunch of overpaid people who have forgotten their oaths for nothing more than a two quid food voucher a day that works barely get you a mouldy cheese sandwich from the MRSA ridden canteen?! Lol. What’s worse the cleaners all have Ebola! Lmao!
Anyhoo is once a month, which is kinda cool, and the next major meeting will have a dietician. Now there is something I intended to ask me last GP about before being kicked off and keep forgetting to mention it to my latest one.
Maybe in time I can help some of these people? I mentioned skin trouble to the last sitting next to me and she went to say she used something and as she started with the letter ‘T’ we both said in unison “Tea Tree Oil!” and she said how weird that was.
People not thinking or believing there was anything wrong with them, strained relationships, the temperature, getting about on buses, moving about and even having to bend over or crouch. All and more I mention here were uttered by individuals within the group.
All were sad and frustrated that our condition is frowned upon and even that some insist does not exist. I told them I very much plan on changing boot only that but a bunch of other stuff too.
People gently nodded as if it sounded good but far fetched. I mean I am just one guy…how could I do anything?
It just so happens that someone in the group has a mother who just might have some insight into that particular answer?
This blog has many. They may take you some time finding them all?
Still what took me fifteen years can now take others a few weeks… or a few months?
Trust me on this… no matter what you think… don’t let it takes you the same amount of time it did me. It will be…harrowing. And then some!
I visited the pet shop for a bit but then went home and grabbed me bike. I cycled over the grounds of Forty Hall in just a thin top.
The sun being out was too much of a draw and I long to be out all day among the green fields and forests.
A warm Spring sun and the aroma of flowers in the air combined with the leaves just appearing and flushing the trees with various shades of Jade.
Gently rustling leaves on a cool breeze with ChiffChaffs and Chaffinches singing their melodies to anyone that would hear.
Dusty paths and bird hides are among those that last upon my chosen summer haunts and with camera on back I search far and wide for the more unusual things to spot and photograph. Bearded Reedlings are a long wanted sight missed briefly tell years ago but replaced by Water Rail and Reed Buntings.
The pinprick holes that adorn the night sky will be my focus this year. Gazing among the starts at sights dreamed of since a young boy will finally be achieved. But sights alone were not enough to get my starry night blog moving. No pictures and videos were also something to be acquired and posted about.
Thirteen blogs exist I keep. Attempts to maintain have made me weep. Tools missing for many a year. Acquiring now I give great cheer.