So , I have been putting up with lots of pain , horrible, while exercising again , why , well I reached a point where I was suffering so much with no energy and just feeling crap, depressed under the mental health team, I guess after looking in the mirror and not liking this terrible life, I felt I had nothing to lose.
Yes it has been the hardest thing so far ever, my FND often does not let me walk or drops my foot , but not when , I run , well it has taken me Six weeks of slowly / gently increasing all area’s of excise, I bought a large gym ball, I joined Bracknell sports centre , Everyone Active, I have done Pilates, shape, classes , crazy , crazy , Pushing through the Pain , telling myself it’s hell of a life the way it is and the worse than can happen is I will know if this Pushing all area’s of fitness, trying to build muscle again around my core is going to be painful , the emotional emotions roller coaster of looking daft not being able to do 80% of what the rest of the class , half my age can do is madness, why put yourself through this, well , I was taking so much medication my unrine was dark yellow despite drinking tons , peeing all the time , searching , hiding medication, knowing my life was a burden for my loved ones, not really knowing if my thought processes were even working properly. So much reading , learning , but my fight in flight , failing , just causing me grief, I use that word instead of pain as I don’t think the word pain is long enough, it should be the most complicated word in the dictionary, very complicated, disastrous, hurt beyond hurt, both to the body and mind. If only it was so easy .
I said I would up date you and I am , no it is a journey of I don’t really know the end yet, so far I am really happy with the results, now six weeks on, so many classes , playing pickable with a group age from 18 years to 83years is great fun , my wife is playing to , well you won’t be surprised in this method of my madness, I have had days , I can barely move , needed Thia massage to free me , hot baths, steam room, , swimming .
Salt pool, deep heat . Well if I am going to have glass going around in my lower back with osteoarthritis, failed back surgeries, FND, a broken Mind / Brain , so much pain , I want to die through all the love I have from my wife , daughters, family , why , why , Chemicals realised by the brain through excitement, excise is going to help you I read, I was down and out slipping so much fatigue, I was sleeping or lying with no energy to do much. Now , I am up and about again , helping around the house, walking everywhere, a little further every day, Remember it started with , I could only walk 50mts / 100, now I can run a mile , but my FND might not let me walk very far , how mad.
I have gone out again with friends and feel good at times, a start , so what happens when I go into loads of pain . I have more fitness to coupe better. Please remember, I know I am lucky to not have the many conditions, that many of you have and realise my mental methods may still back fire.
I deliberately go to new places , listen to, smell , taste the air , using my vision to see , touch , feel as much as possible engaging my senses, even when running , I feel the air , listening to my breathing, struggling, telling myself you can do it , Yes when I push , sensations, chemicals make me feel better, mixing with people again engaging, helps me.
I know I am a new me , not the same person I used to see in the mirror, I have learnt to realise weather I like it or not , I am older , with various conditions. I am bonkers , I have hot and cold showers , when I am in loads of pain , I pull out frozen peas, then wash up in hot water just to distract my brain from anything to do with suffering.
I fell down the last few steps of our staircase and came crashing into the living room my wife jumped. Yes I was hurt but not like nerve pain , so it felt good.
The dentist today repaired my chipped back tooth from where I grind under pain, he had to numb the area, I wish my back pain could go away like the needle of local he gave me , I was dozing while they worked it laughed, I just wanted him to understand this is not pain you have no idea.
Last week the train to Kew Gardens , another day to Battersea Power Station , up in the 101 Lift , you go up in the lift up the tower and pop out the top, the view is amazing. Sunday hopefully the Tate modern.
I walk as much as I can , I sleep better, I still need sleeping aids, but less pain killers.
I live in the moment of life , embrace my discomfort, I acknowledge my pain with respect and compassion.
I asked my pain specialist, what he felt about my situation and could I do damage, he said the benefits for me would outweigh all . Yes slow , anything that can put muscles around my core will help , if I can push through the pain , both mental and physically.
The lovely really positive thing at the moment is that yes , now going out , being active is more fun , than being stuck in my circle of fight in flight with no energy and negativity I had. I smile when in pain now because at least I am getting out and hope to work again soon , even if part time .
The list is long, I will show you mine in more detail soon, for now he is a few:-
Water more , less caffeine.
Mix up my food with healthy and favourite.
Porridge, berries, strawberries, honey.
Favourite TV.
Meditation, taken years but works just have to find the right music and change it to suit your mood.
Don’t beat yourself up .
Train your body and mind to get back a sleep routine, says I typing this late.
Recognise, the situation, Breathe, respect , drop anchor , think about the best thing for you right now.
No need to fight, Know when to except and go with the pain.
Any excise is good , even in a chair , crutches, bed , floor , just little by little do more when you can , switch it .
Colour full books by my bed, beautiful pictures of my family around .
Look forward to things, know it is ok to have what ever condition you have , because I did not .
Again this site is amazing , I have taken a look most days despite not writing, waiting for the right moment, I could tell you wonderful people , what mad things I might be trying.
will update you in a couple of days as to how my method of madness is going , love to you all xxxxx x
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Crystallmatters
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My eyes are welling up at the bravery you are showing.
I'm up at this time of early morning, coping with unrequited restless legs and medication shortfall, and I can only gasp in admiration at what you are achieving and coping with.
I can tell that you have huge reserves of mental strength - ok - they are being sorely tested--- but you have them.
And most importantly of all-- a loving and supportive wife and long suffering family.
All the very best on your continuing journey and utter respect for what you are achieving.
You are a standard bearer for all of us in pain, a shining example of what can be achieved.
What a wonderful story! I hope everyone on here reads it. I'll say just one thing: as things continue to get better for you (I have no doubt they will) please think carefully before giving up on any of these great things you're doing for yourself. Meditation, in particular, because it's still so uncommon, is easy to let slip, but if you keep on doing it every day, and maybe look into different ways of doing it, I promise you will not regret it!
Thank you, you are so right, The meditation has been key and still is key to my coping with the balance between Pain and mental wellbeing , I really get a kick when it goes well.
I am not sure where this journey is going to take me , but at least I know I did my best. It will be interesting to find out for my self the pro's and con's of excise and the benefits' verses the other way , I was still slipping down, being less able , more pain and feeling crap. Such a hard circle the life of disability, Pain, fatigue and how it impacts my mental health.
Thank you for your kind words, I will make sure Meditation stays a main focus of my wellbeing .David xxx
You've made me 😢😭 I can't find that button to drag myself out of my pain filled life and find motivation to actually do something different rather than live a life with all 4 walls barracaded against all comers!! I've had therapy and it definitely helped a lot but it's the dank dull days, lying in bed hurts but it hurts more when I get up, getting dressed is a mammoth task whereas it used to take 30 seconds. Thank you for taking the time to write, maybe I will go to hydro therapy this week, I keep cancelling it and yet I know it helps and I feel better for it, but it's the drive there and getting changed and driving back, just overwhelmed.
But it's encouraging to hear that somebody has broken through that barrier of pain.
I told the surgeon, I'd rather have a baby any day, I had 4, than have to live with this.
I hope you keep up with the exercise, please keep us posted xx
Hi CinnamonRose, Thank you for your kind words, You know, I can only ever write from my own experience, so please remember this in anything I write / say, I don't think anyone apart from those sadly going through the hell of pain and fatigue can understand, A massive mix of Pain causing pain beyond pain affecting my brain causing disturbing thoughts and mental health illness , would I ever have believed this could happen to me or I could never see reason or a way to fix, No , my brain so responsible for causing me agony , depression, so much learning , listening , trying to understand when told it is all in my head, my brain, not helpful, failed back surgery, except , you are taking to much Medication, so much information, I just want to Thank the medical teams that have been amazing with me although it is sad things had to reach the end before, the real help kicked in, or maybe I never got it, maybe why me, I look normal but I am not and the thing that is destroying me is a four word Pain, I have always said not a good enough simple word for all the damage it causes.
I think the problem for me is that like a tiny shadow that soon grows into the most enormous overpowering scary shadow, the journey, so terrible of let down appointments , long waits, changing minds, the creation of anxiety, not realising that this journey so long creeping up on you without realising then come crushing down on you.
So do I get it, Yes, I also understand thanks to Sandra Wiltshire and the team at Oxford that at the age of 59 for me my child hood plays a part in my coping mechanism's, a lot not good, Pain is the hardest challenge in life I think, and I mean the kind of Pain that hurts the most through Illness or injury, Pain that makes you sick, cry, feel life is not worth living. So many people have helped me to understand the word Compassion for me and others, to realise this is not my fault what has happened, even though I still question with compassion , recognising, the situation with respect, the ability to Breathe stop and drop anchor. Its great that when in that moment of despair and hurt you are supposed to remember all the things that will help you, How-ever when I stopped beating myself up and except I try, I get things right sometimes so good. I have taken so much medication it has blocked me up, Constipation, great on top of all this, then sick, I need more meds and now they don't work well as my body and mind has got used to them, Cutting to the chase, missing out a bit. Music first helped, finding the right type and beat tunning it into my pain, excepting the pain, writing stuff down different colour paper and pens, to remind me of little things that would help me, loving pictures, close favourite TV comedy, Teddy to , anything that has a feel good feeling even if not all the time, Music led to Meditation in my way, Space time to reflect look at the sky, pull back the curtains at night and let the Moon in, look at the planets and stars. I know for me I still have a very long journey ahead, what road how long maybe never ending.
I have been stuck in bed for weeks at a time or still stuck , Cant move Frozen , I can hear you but can't respond. Will I ever be Pain free, only for glimpses, that's what so crawl , how can you be given a respite and then been thrown back. Now we are all different, you do well, and yes , I struggle still with getting dressed but it is easier , Do excises' in bed just a little, even just pushing up the covers or pillow, the saying Rome was not built in a day as a pain sufferer is an understatement. I changed the cloths I put on to make it better, Use your room as a place of comfort, find a few new things to put in there, It has to something that can make you smile even when you don't want to. Its still winter hard on pain. You have a gym around you, any new slowly increased movement on a twenty week realistic program will see you with a benefit. I agree I love the Hydro pool , but the effort before and after is off putting, so work with your home to do the same movement excises and don't tell anyone except you so there is no pressure. Yes in case you are wondering I have really painful moments and yes I have gone through twelve weeks so far of sometimes increased pain , how-ever I can do a lot more, I do feel better, I have more energy to cope with pain. Remember even your pillow, until a book or two can act as weights. Only tell someone when they notice you are a little stronger.
So as I gained strength , I stayed awake until time to go to bed, took a long time but now it helps me sleep, do I need to go on my bed a lot and rest my body yes, would I stop myself falling asleep no, so not so simple. Hardest thing is I got to a stage, I did not want to engage with anyone, people, they don't understand. So yes when your ready a trip to somewhere is good, Hydro pool brilliant, but when your ready.
No expectations, slowly slowly, yes more slow than a snail, that's the way to make progress and Yes there will be peaks in pain. I asked myself what have I to loose, I am in so much pain, I want to die and get bad FND attacks when my pain really kicks in, I might as well give it a go.
No I really don't get it right most of the time. I hope you do give your self compassion and I hope a little something, I write rings a bell, even to know you are not alone and what wonderful people are on this site. Love to you , remember when you can engage sound , vison , touch - feel even taste it does bring down the volume level on pain. Take care well done you xxxx
Yes I'm under the pain clinic among others at RUH Bath, no, I've not heard of the implant, I certainly will take a look. Everytime I try and push through the pain, it seems to set me back, I want to be normal but have to accept this is the be normal and not beat myself up because I can't do things!
Yes , I agree, so hard , seem to go around in circles, I think I now set the bar lower , I find this very upsetting, what a life changer when all you want in the world is less pain , I know , such an impact on both one’s health ability and most of all the mental health challenges, what did I do to deserve this, a pot of sleep deprivation, just what you need to start the next day, I guess the mind can be powerful . I had after thirty plus years of suffering a strange moment when I looked in a mirror and realised, I was not the same person anymore, I think maybe it helped me a little except. I am still despite suffering loads of pain tonight going to go to a body balance class in the morning, I am a little stronger and need to find out if it is possible to push through the pain tonight find out if there are worthwhile benefits, I guess to a point , I can’t be worse off unless something breaks . Just try not to beat myself up on nights like this when I wish I was already asleep 💤 who knows what will it be a non beat yourself up night , a round of toast, banana.
Running horse music and another zoplican. Do you remember Hitch Hikers guide to the galaxy, when the whale was falling out of the Sky ?, The meaning of life .
Going listen to the music and drift . The stimulator abbot paddle inplant has made a difference to me , Ask why would you not be considered. I had to go on an optimise course and wait two years but it has been worth it . I know we are all different, they make you understand it is another tool for your pain kit , a help with bring down the volume. Hope you find it is possible for you . X
Thanks so much for your reply, a lot of what you're going though/ been though sounds familiar in some ways, I'd set a goal this week to get out of bed and dressed by nine and make the bed properly, 4 days down, 3 more to go!! Such a simple thing but it means a tremendous amount, often I've been dragging myself out as late as midday, so am making progress 🤗
yes your right , I think we have to realise actually what you are doing is monumental, it is not easy to get to sleep when you are a pain sufferer and the little things we used to do we find difficult,
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