Wellbeing with pain

[Crystallmatters]

Pain and wellbeing is just one thing that comes to mind as my brain constantly struggles with this new challenge, I have set myself . So how’s it going I said I would update you all on my method of madness or maybe it is not so . I am still training my brain to except pain with compassion, to tell it all this pain of varying levels is ok .

I am better with all the classes I do , body balance , core strengthening, gym , breathing is the secret of all core strengthening for me, it also improves my ability to focus, meditating as I try to turndown the volume of the pain , for me it like controlling an amplifier that mixes up anxiety, stress , concern over how many things it takes to control the life of not knowing when you will suffer more , how will my FND now be , when will it strike , I know I should not have these thoughts there not helping .

What I see , hear , fell touch , smell, taste , experience, wonder , will my medications still be available to me , will my condition, get worse better or better , that’s hope , I hope it will , it has changed a lot.

I am getting a stronger core , I am telling my brain you have nothing to lose push through the pain , with lots of classes, pickleball , body shapes , less Mills a killer , distraction my brain doesn’t know what’s going on , I am trying to re wire my muscles brain , keep telling it it’s ok . I am on stage an act , trying to distance, disguise my suffering, telling myself remember compassion, to recognise the situation. Great. Well my FND has changed , moved adapted, I now have more lower body strength, so as I am better when FND hits to pick up my foot , pain hits harder through the knee , my head hurts , I shudder as pain rips through my whole body , pain in my jaw, , clenching my teeth , I stop recognise the pain what’s happening, stop breathe , try to take control what can I do , it’s not easy as in this moment, not all I do , I realise later was the best decisions . I don’t think when in a bad pain flare up with FND striking you can be so perfect at getting it all right.

So with all this excise and core strengthening am I better , yes , I can control things better the pain is still the same at the moment, as I use more endorphins to replace the lots of extra non described medications , I should not of been taking and use my Gabapentin with declefinic I have spelt wrong . I am struggling with my Stimulator control to get right with this new regime , using more feel programming at night, Music is the most powerful tool I have and again getting the music patterns right .

I can run again for the moment at a big price , not sure yet where this will go , my mental mind verses normality for a moment, then a flare up. Yes like massive hills , up and down , this is life of a pain suffer, telling your brain it’s ok , when you know it’s not, living a lie of a life , making out to the world you are ok when you are not . Ticking boxes , trying to get things right al, the time .

I will admit , I don’t know where this journey is going, I have to continue longer to learn if this has all been worth it , maybe it’s just hope .

I was looking at the grave stone heads at Baildon cemetery, looking at a bit of history, Born 1806 , then looking up at the roof of the church thing about a fall , why do I carry on ? .

I can see , feel , I am struggling with this challenge, I have set myself, I can do things with more easily, better than before , so excising is good for me , I am not worse of, just a lot of effort.

I do enjoy the classes and pickleball.

Hot shower , Steam room and pool .

pacing is a big problem for me still working on it .

hope it all makes sense, will report back in soon , love to you all xxx

[timbowPSP]

HIYA Crystallmatters, What an interesting post! Whats the effect of FND? I've not come across that word. You seem to be doing so much .... great .... but does it get you anywhere?Maybe just knowing you ve done ur best. I ask myself that at times!

I am 83, male with PSP diag 6 yrs ago. still chugging on but downhill steadily. Have written up my 'journey' in 6 pages. with facts, suggestions, tips etc . Hapy to send u a copy if you wish, but need ur personal email, as too much for this platform.

PS I am no doctor or expert!

BEst wishes, and PSP = PLEASE STAY POSITIVE! TimbowPSP x

[timbowPSP in reply to timbowPSP]

BY the way, are you into crystals? Tim

[Crystallmatters in reply to timbowPSP]

I was given on an Optimise course in Oxford as were a few others a tiny Crystal to get out and feel when you are in pain, part of my pain tool kit, it was so kind. We all had to bring in on the last day an object or something that we felt or currently used to see, touch , feel or taste, hence this kind person brought in her large Crystal and us all a small one. It is what gave me the idea to call myself Crystallmatters, to be kind and compassionate, plus I think a Crystal clear , Cry all matters. Crystall beautiful in the light. Many interpretations.

Hope it all makes sense.

[timbowPSP in reply to Crystallmatters]

THANKS FOR ur good reply CrysMat .....FND sounds bad ..... so for other similar ones.

My first initiative when diagnosed PSP was to improve an already healthy diet, exercise, therapies and research. So I wrote my 'Updates' to help othwr newbies. Will send copy if you like but need personal email addresses.

All the best and P S P = PLEASE STAY POSITIVE! TIM

[Crystallmatters in reply to timbowPSP]

Hi Timbow

FND stands for Functional Neurological Disorder, it is a name for a wide number of conditions, mine is we think linked to pain which causes glitches' in the brain, a few cross wires, it is still despite over 30 years plus of specialists working in this field still not fully understood. I have multi failed lower back surgery , including incorrectly placed pinnacle screws that had to come out. I when FND kicks in don't know until I feel it dragging or trip on my foot, I then get shaky and brain fog kicks in, Lights can affect me , I don't do very well in super markets. It is complex and many things can happen.

I get many electric shocks due to nerve damage, I take Gabapentin to help with this as many times I have ended up in hospital, including with the FND not being able to walk for ten days, frightening, amazing what the brain can do.

I have both my girls getting married this year Natalie on the 21st June her Birthday in Spain and Emma on the 23rd December, so I want to do my best to be fit and well, or best I can get.

Studying the brain and pain, being able to adjust the volume makes a big difference, so understanding the pain circle and how it works is helping me.

Yes you are right maybe just knowing you are doing your best. I have been having help from a brilliant Specialist through the NHS at Oxford.

Exercise and if you can push a little helps the endorphins which is the body's own pain killers.

Yes , pain levels have come down a little, less medication, feel more relaxed, sleep sometimes a little better, sleep is hard, but I know how to rest, shut down the mind.

For me. I admit I struggle with life, the air I breathe often makes me feel like I am drowning, I think, I am making progress especially since the discovery was made as I had an abusive child hood but did not realise my coping mechanism's were poor, now I understand what that all means in the mapping of the brains memory loop, I am starting to adjust.

It is to early to say but I think the benefits of my classes have reduced my sciatica and improved my leg strength, helping along the way my mental health which helps turn down the pain. The pickleball , has helped me again engage with other humans.

How long will I be able to keep this up I don't know ?.

I am sorry you to are suffering, It sounds like you have been and are on a journey and are doing brilliantly, its just a pity life can chuck these things at us.

Today I was doing body balance in Lister Park overlooking the large pond small lake, a lovely lady called Penny was meditating and enjoying the beautiful day, we ended up talking and she was also a pain suffer and using her self taught best technics at pain control. We had a lovely conversation about her trip to Peru and India. I hope one day we bump into each other as I told her I needed to pick up my wife.

Small world.

Have a great evening and Thanks for your kind words, love to you and all David x