How do you cope?

I've read articles like this on The Mighty & other sites, and want to share my thoughts.

A lot of people ask me how do I cope with my illnesses.  The simple answer is - I have no choice.  But it goes further than that.
Friends & family have told me they admire me for carrying on with my old life to the best of my abilities;  That I don't let them consume me.

Chronic Illness sufferers are often referred to as warriors or fighters.  I personally hate these terms because I am not fighting anything.  I think this is key here.  I am not entering a fight with my body that I cannot win.  The only winner here is Chronic Illness, to fight against it is dangerous and in the long run will make you worse.

Acceptance, knowledge and pacing is what's got me this far.  My M.E specialist told me that 10% get worse, 80% stay the same and 10% get better. Whilst I would love to be a part of that 10% who's symptoms get better, I have to be realistic and aim for the 80% with the hope that one day I can be free of M.E.

There is no point being negative, I grieved for my old life for a year or so after being diagnosed, I thought why me?! But that thinking gets you nowhere.

I have moderate M.E (severe in a flare), my Fibromyalgia fluctuates daily, Kyphosis/Lordosis is said to be mild on paper, but doctors don't have to live with the pain I go through on a daily basis.  My curvature has also caused a herniated disc.  My tremors;  I have had since a kid and I have just got used to them, I barely notice them now until I have use a pen or hold a cup.  I can barely sign my name (it is different every time) and my handwriting is almost unreadable. As for a cup, I have one where the handle moves but the cup stays still.. Brilliant invention!  But for the most part people notice my shakes for than I do. 

I still have my interests prior to getting ill, I just can't do them as much anymore and not without help. I used to be very independent but now I am very dependent which has taken a long time to get used to. 
But I am very grateful for the things I can do.  Even though it takes everything out of me.  I have to pace myself for 2 weeks prior to an event.  I need to lay down regularly, find or take a seat, take 10 min rest breaks every 1-2 hours during a weekend event.  On day events I use my wheelchair or scooter.  And after I have to ride out the crash for however long it takes my body to recover (usually 2 weeks being severe, then another 2 weeks of needing several naps a day)
I use M.C.C (Motorbikers Cosmetic Company) holistic products on top of my medication.  I wouldn't be able to function without medication.

This is how I cope with chronic illness.  It sucks! I can tell you, but this is my life now. 

I'm still here.....just

Short update, not been posting as been to ill.  Had a week crash after going to a wrestling event in hometown. After recovering enough I then went to a very small music festival (took campervan)
Now back at mothers place, selling my car, transferring personalised plates to new car,  AND sorting out repair work to my new car thanks to damage done by pavement works!  I'm so mad.  I don't think I have experienced the crash following the festival, Although I have tried to rest, resting periods have been in between jobs to do with the cars.
Currently feeling very stressed, and my brain keeps freezing, words aren't coming out, I'm getting angry and frustrated, as are people with me.

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6 Day Crash

Been quiet for over a week.  But nothing exciting has happened, quite the opposite, I've had a 6 day crash, following a busy weekend.

Bedbound for 5 days, minimal light and sound. Some days I was able to watch Amazon Prime for a couple of hours on very low volume & subtitles. Other days nothing.  
My mother is on holiday, so I am at hers.  Looking after the dogs, or rather they are looking after me. 
I am not allowed pets where I live, I really want to find a 1 bedroom ground floor flat where I can have a dog or cat. They make me feel so much better. My mental state would not have been good at all if I was on my own. 
I managed to drag myself up for work, which I did most smallest amount possible before going back to bed. 

Today I've managed to get up, have a shower, which I had to rest again for 3 hours after. I have done a bit of blog advertising, after I post this I will be going back to bed again.

I'm trying really hard not to go crazy and do loads of activities and errands etc, otherwise I will be back to square one. 
Coming out of a crash requires a lot of pacing yourself.  It's so easy to think, oh I'm feeling better today I must do this, this and this. But you will just make yourself worse.

M.E is such a debilitating illness.  Thousands in the UK have this awful illness.  I am lucky that mine is moderate, due to a great clinic in Norwich, The lady I see told me to pace, look into the illness and rest as much as possible.
So many people get told by doctors to do the opposite, to exercise which is the worst thing you can do.  It makes the illness much worse.

 My brain is starting to go blank, heartrate is slowing, and my eyelids are starting to feel heavy.  That is a sure sign I need my bed again. So I shall sign off for now. 👋

The state of our NHS

Ok, So I want to post about my experience with the Pain Clinic here in the UK. And I'm interested to hear if other people have had a similar experience.

Stupidly I think I have cleared out and thrown away old appointment letters, So I have no way of remembering the dates.  But I will try and remember the months approx.
I also apologise this is a long one, Bear with me 😝

So my first appointment was a consultation with a doctor at the Pain Clinic in Norwich. I was told at the time that the Pain Management course would happen within the next few months.  And would consist of a mix of one on one sessions and group sessions (group sessions make me very anxious, as people stare at me with my hunched back and shakiness)

In around June/July 2018 I attended a group introduction session, which went over what PACE was (Pacing, graded Activity, Cognitive behavioural therapy, randomised Evaluation) and various other ways to help manage pain.
I thought this was the start of the course.  Wrong!

I then had 2 courses cancelled, One was shortly after the introduction, the other was in December.

In January 2019, Finally!!  I had an appointment.  As I waited in the lobby area, I thought how strange there is only me there.  When I went into the room with the physio.  She asked if I knew why I was there. 😕 Bit of a strange thing to say.  So I told her of the two appointments that had been cancelled, and that I thought this was the 2nd session in the pain management course.  Wrong again!
She said "oh no, that hasn't started yet, this is just a catch up to see how you've been getting on"  What on earth is going on here?!?! How do you think I've been getting on?!  I'd been waiting around 7 months by that point.
Before I left the clinic we both went to the reception and made sure I was on the next one. March.
I also tell them to remove my mobile number from they're records as I live in the middle of nowhere and I don't get any signal. They had my home number and my mothers home number.

I wait and wait..  In May 2019, I get a letter stating that the pain clinic have been trying to call me in recent weeks, and if I don't call them within 2 weeks of the letter being written I will be removed from the waiting list. 😡😡😡😡😡 You've got to be kidding me!!! ( This had also been sent to by doctors surgery, which had me look like a time waster.)
I looked on my home phone... Nothing, I rang mum to see if they called there.. Nothing.  I looked on my mobile, they had called and left a message 10 days earlier.  1 call.  On a phone I said to remove as I don't get signal where I live. 🙈🙊
So, I try to ring the clinic, I rang 6 times over two days, left 2 messages, No answer.
So I rang another department, a lovely helpful lady answered, she tried and they picked up straight away.  Told her they're systems were down so couldn't see what number they tried to call me on and how many times..... riiighhtt….
Anyway, a nice lady called me back and assured me that I was on the list and it should be happening in September..  Is it me or is this being pushed back and back and back?

Today is 4 June, Mum rang today demanding answers, this is ridiculous.
The receptionist said that I would be needing a phone consultation before I am put on the list for the course?!  This is crazy!  I should be expecting a phone call in the next couple of days from a doctor at the clinic.
Apparently they are recruiting more psychologists, and they don't have enough staff.

There is a serious crisis with out NHS.  This department is not the only area within the NHS to have serious issues. I have a Herniated Disc, Fibromyalgia, M.E, Kyphosis, Lordosis - These are not illnesses that can be cured with a psychologist.

Has anyone else had troubles with they're pain clinic?  or management course?  Please post in the comments.

Busy Bee

Been a few days since my last post.  Been a hectic few days.
Thursday I was at a funeral. Which was a beautiful send off for a lovely man I had the pleasure of knowing.

Friday took my nan back home and went shopping (I HATE shopping trips).  Anyone with chronic illnesses know how hard it is to do a shopping trip.  I think showers and shopping are the worse activities for my M.E.  I do have a Blue Badge which makes shopping a little easier as I can park near the shop entrance. Before I had the badge, my mum did my shopping as I couldn't manage the walk across the carpark, walking round the shop and then the walk back to the car.  It was all too much for my M.E and Fibromyalgia.

Saturday, my mate came over to mine, had a few beers, watched the Speedway GP and Champions League Final and attended my landlady's birthday and a Ceilidh upstairs to where I live.   I didn't dance but enjoyed watching people dancing and listening to the band.  I really love Folk music.  It was really nice to watch a band and then in the break go downstairs to my bedsit and lay down 😁

Sunday took my friend home, had a rest for a couple of hours, Then headed off to Norwich Football ground; Carrow Road for World Association of Wrestling's Fightmare.
Which featured the Knight family, WWE(F)'s Billy Gunn, Mick Foley, Nick Aldis (aka Magnus) amongst many others.
I used to attend quite a lot of wrestling events before I got ill.  Was good to get out and see a show again.  Although I am paying for it now, as usual when I do anything fun :(

Still in a lot of pain.  On a lot of painkillers - Which reminds me, my afternoon doses are due.
Using Pain Slayer. (What is that? https://lifewithmebyjaz.blogspot.com/2019/05/painslayer.html )
I expect my M.E crash to start tomorrow, Usually takes a couple of days following a weekend like this. Although I hope with my pacing it won't be too bad. 😊