Update on my absence dear friends. - Fibromyalgia Acti...

Fibromyalgia Action UK

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Update on my absence dear friends.

Keepstrong profile image
Keepstrong
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Hi friends. So sorry for my long absence.

I have been again in and out of hospital like a yo-yo due to this horrible Neurological functional disorder and its Seizures. It's caused a nasty flair up of my fibro myalgia and Myalgia Encephalitis.

Also my osteoarthritis, but thankfully the stereo injections helped some for at least that pain an discomfort.

It's been explained that all four conditions are actually all related to the multiple sclerosis family.

Just with different anatomy of the brain effects.

I'm still being as active as possible and I'm doing the plant potting of my flowers that I took from my back garden rockery when I had to temporarily move home to a group floor apartment while the council build the extension ground floor bedroom and bathroom.

So it's been quite stressful with packing up 27 years of belongings into storage an live out of box's till 12 weeks time when we move back home. So with that an my daughter still rehabilitating after she was medically neglected while in hospital last January an we almost lost her, she was told its only a flew an would not observe her properly, she ended up on life support in a coma for almost 3 weeks and when she came through she was totally paradised. It took 3 months of extensive rehabilitation treatment of speech, physiotherapy, occupational therapy rebilatating programs in hospital. Thankfully she's home the last 9 weeks and is 70% fully functional. But tires so easily and still needs my assistance and of course our family an I attention an support. So this is why I'm so absent here. But I am still researching in my spare time for updates on fibro myalgia, myalgia Encephalitis, Neurological functional disorder,Micro vascular angina and Tinnitus. These are what some the conditions I have an are the most disabling. I do not want to be in the wheelchair that I have been measured for me. I'm mobile with the use of a walking stroller when out doors an a walking cane around the home. I do however have a lot of falls or as I call them fights with gravity and gravity wining.πŸ˜‚πŸ€£ But some times I win and don't actually bounce on the floor πŸ€£πŸ˜‚. The way I think 9f it is that I'm alive even if all these an lots more conditions I have are trying to either interrupt or end that. But life is for the living an for fighting everything that comes at you an making your mark in the world by surviving. You show your conditions that your in charge of it not it in charge of you

Bad day an no energy to do anything or to sore to get out of bed? Forse yourself to an just even sit in front of a window with a nice warm drink, wrap your hands around the cup cuddle it so it will help your body desient a size and feel comfort, play a YouTube video of your favorite music and just even nudge your body to the music to dance an this will up your energy levels an will also lift your mood an that will help your pain levels too. There is also a lot of different tone music for Tinnitus too an also some guided imagery uplifting meditation.

Warm showers, long soaks in soft warm water an lots of slow deep breathing.

And as physiotherapy/ occupational therapy an consultants always advise is some very slow but gentle exercise even chair exercises from YouTube.

This is the research I have come up with for most of these health issues.

Plus to avoid what ever food is going to make you feel tired, bloated, thirsty because if it's making you physically feel unwell think what it's doing to your muscle bones cell's an organs. An this in turn will cause flair ups of your conditions.

I so hope this is of help to you all an again so sorry for my absence.

Wishing you all a pain free fun lived day. Sending you out Healing vibes of comfort and support. πŸ‘ΌπŸ€—πŸ’•πŸ’

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YASMINTINA profile image
YASMINTINAFMA UK Volunteer

Hello there, glad you are putting in some flowers just to take your mind off everything that has gone on and your words show positive thoughts we all need them , look like the rain is coming our way again , the massive slugs are having a field day with the wet conditions and taking chunks out of my plants grrrrr, like you trying to do little bits but weeds are in front as always but hey ho I’m still going to give it a go xx

Keepstrong profile image
Keepstrong in reply to YASMINTINA

Hi lass, that's great at least it will help you be mobile an give you some fresh exercise an peace of mind. If you can find where the slugs are nesting you can put some rock pink salt down an it will help with the slugs just don't let any the salt go on your flowers it will kill them with dehydration. Slugs just love moist weather. It's ant's and blood suckers we are totally gone bad with they are just everywhere ant traps an powder is not even working.

I'm glad some of the tips I gave are of help and I hope you will have good weate soon. We are having 2 seasons in one go here in Ireland. Sun an heat in the 20c and then lashing cold rain and low temperature we wake up with hear stroke an go to bed smothered with the flue πŸ€£πŸ˜‚πŸ€£πŸ˜‚that's Ireland weather for you haha. I hope you have a great evening lass. So wonderful to hear from you πŸ€—πŸ€—πŸ€—πŸ€—πŸ’πŸ’πŸ’chat soon I hope hugs Comfort and light πŸ˜‡πŸ‘ΌπŸ˜‡πŸ‘ΌπŸ˜‡πŸ’πŸ’πŸ€—

in reply to Keepstrong

Sorry to but in but tea tree oil or talc are good for getting rid of ants, there are those pens you can squeeze and put it along the scurting board. Love and hugs Lynne xxxx

Peder profile image
Peder

you've got all that going on and still gardening... well done for you. Keep it up, cause you're putting me to shame... i have trouble mowing my lawns but i haven't got half of the problems you've got. you're an inspiration to us all....

Keepstrong profile image
Keepstrong in reply to Peder

Hi Pedar πŸ€—

Thanks so much for your kind words dear friend.

Can I just say that you are doing brilliant don't sell yourself short.

Your still showing your health conditions that there is still fight in you yet by doing the things you can do.

It's not easy when your body feels like it's in a boxing ring with a pro an you don't even know how to block a punch never mind do Participate in a bowing match An your body has been bet to a pulp before you can even lift a glove.

The trick to be able to do things is you concentrate on using your nose to breathe in with your nose instead of your mouth very slowly an you hold that breath for 2 / 3 seconds an breath out naturally out through parted lips.

By doing this your takin in the fresh oxygen to release the pain as you breathe out an let go the stail oxygen. The stail oxygen is what makes our bodies so in pain with cramps, spasms inflammation and fused head causing physical and emotional fatigue.

So by doing these breaths you be able to do what you enjoy but spread yourself out. Like e even doing the mowing, do it for 5 minutes stop take a sup water then do another 5 minutes an keep focusing on breathing. Before starting to do mowing or gardening. Make sure you have a bottle cold water near by an any gardening items you need so your bit waisting your energy having to go back and forth to get things you need because this will only tire you out. An when you finish the mowing etc don't just get stuck into tidein away. Sit down an look at the great job you have done an give yourself ti'e to enjoy the freshness of it an have some more sups water an then after your little break tidy up. I would move to hear from you how you get on trying this peder.

I hope you br able to try what I suggest in everything you do as it will help you to control your conditions. When you focus on your breathing so the oxygen can do what it's supposed to do to help the body function. Your mind gets occupied an your body is able to destress despasm an energies. Plus the other upside is using your muscles to do what ever the activity, mowing, gardening, tidying, doing some house work, getting out even for 5 minutes walk, it's all using your limbs, switching your mind off strain and life's pressures as well as physical and emotional fatigue doesn't get to control you. So you see no mater how small the chores are you do the more the better but take 5 minutes out every fez minutes this way you won't tire out or over work your muscles an body. I so hope this will be of help to you and you be able to give this a try an enjoy your gardening an other activities more. Don't forget to have a warm to lukewarm shower after it so all muscles be energiesd after using them an help relax you for the rest of the day or night πŸ˜ŠπŸ€—πŸ˜Š sending comfort and light CeπŸ€—πŸ‘ΌπŸ˜‡

Peder profile image
Peder in reply to Keepstrong

Thank you so much for your reply. Fibro has a lot to answer for. Im due to retire form the police after 30 years service at the end of Oct. I will have more free time and will be able to acheive more in lots of small doses. At the moment, im working full time, to try and fit anything in on my days off is an added bonus. My wife, although was a ward sister in Intensive care, she has had three corrective foot operations, her father died and work were supportive of her foot operations and dismissed her 7 days before the operation. All of this in the last year and shes got an industrial tribunal hearing in 3 weeks for unfair dismissal , so ive had to do most things to support her. By oct, everything will be sorted i hope. Wife has applied for a local Nurse Practitioners role which means more money, but has to study for another MSc funded by the NHS. My 2 daughters are 14 and 15 so help out too. To be honest, ive probably got it easier than most, but fibro affects us all in different ways. I just hate the tiredness and waking feeling like ive been run over by a bus.

Oh well back to some more work....

Take care..terebo nessa oll a'n gwella, till next time all the best. P

in reply to Keepstrong

Hi

Sorry to interrupt but when I try and have a little walk I seem to get panic attacks after about 5 minutes, not sure what to do. Love and hugs Lynne xxxx

Peder profile image
Peder in reply to

hi, its ok.. never think of it as interrupting.. all youre asking for is advice, and all of here need it once in a while. If youre having panic attacks, dont walk alone.. have someone with you... get taken out in the car and go somewhere like a national trust place where your mind will be busy taking in the sights and sounds.

Terebo nessa oll an' gwella - till next time all the best. P

in reply to Peder

Hi

I'm very lucky, I do have someone with me every time I go out. How are you feeling this evening? Take care e

Mystik profile image
Mystik in reply to

Yeah me too I have carers it’s good but sometimes it’s just making sure they r not booked with other patients

I stressful as I have to organise the times and transport

Keepstrong profile image
Keepstrong in reply to

Hi dear friendπŸ€—πŸ€—πŸ€— never ever please feel free to pop into any of my posts, your always more then welcome to an also message me privately too if you wish πŸ€—πŸ€—πŸ€—

Now as to your panic attacks when you try to go out.

I really know what your gone through. I too 18 years ago was so bad I actually couldn't even open the hall door to anyone my family had to, till 9ne day I just said enough. I have this horrible two conditions. FMS = Fibro myalgia syndrome. And M. E= Myalgia Encephalitis. It's no longer taking away my love of the great outdoors an I'm no longer missing out with spending time with my family going on country side trips at weekends an walks in so many parks that we are spoiled for choice to go to.

So how I got going was I use to say okay deep very slow breath in an consintrate just on that breath I'm holding an counting to 2 with as I open the hall door. Then I would sigh out an look at my foot taking the first step outside the door, then deep slow breath in again for 2 and put the next foot out. Then sigh out as I looked at my two feet on the ground. Then I took a deep breath in again for same count of 2. Always the count of 2 for the first day. Then I would lift my head up and sigh out. Then deep breath take next step, sigh out an move next foot forward and just focusing on the gate and saying to myself for this attempt I'm gone to make it to the gate and back up to inside the hall door again just focusing on deep breath hold move sigh deep breath hold move sigh and it worked brilliant. That evening I said okay next level walk outside the gate still doing breath in hold move sigh out and walk 3 doors down and then back up to my house in and stand at the hall door, breat I. Looked how far I made it an gave myself a hug and sighed out with big excited happy smile. But my family where lookin out the door at me for support encase I needed help but I didn't, my determination of no longer being a prisoner in my own making in my own home the last 4 months.

It's gone to he hard I won't lie, but it's do worth the very hard work. Just give it a try use landmarks to encourage you such as your gone to make it to the next poll or tree etc keep walking as you breathe in with only your nose and using parted lips to sigh out will help you so much. I use to recommend this technique to my clients who would suffer with anxiety and panic attacks or where going for interviews for something abs it helped them all big time. I so hope that this helps you can you please let me know how you get on? Big hugs of support Comfort and light. Ce πŸ€—πŸ€—πŸ€—πŸ€—πŸ‘ΌπŸ‘ΌπŸ‘ΌπŸ˜‡πŸ˜‡πŸ˜‡

Hi

You are a real inspiration, just what I needed to read as I was on a down day today but I've now given myself a talking to.

I have IBS, diverticulitis, gastritis, Nash (non alcoholic steatohepititis caused by meds from my Dr over the years) diabetes, retinopathy, under active thyroid, costochondritis, fibromyalgia, sciatica, spondylitis, oa in knees, depression and maybe herniated disc but got to see orthopaedics for that!! Love and hugs to you all Lynne xxxx

in reply to

Ps

I try to think there's always someone worse off than me. Love and hugs Lynne xxxx

Keepstrong profile image
Keepstrong in reply to

Sadly strongbo πŸ€— there is but please god the bigggggg long reply of suggestions I just replied to you will help you. πŸ€—πŸ€—πŸ€—πŸ€—πŸ˜ŠπŸ˜‡πŸ‘ΌπŸ’

Keepstrong profile image
Keepstrong in reply to

Hi dear poor soul, I totally sympathise with you. πŸ€—πŸ€—πŸ€—

I'm so sorry your going through so much especially with so many of your conditions being so much filled with sever pain an discomfort. You would be in the Guinness book of records if you did not have depression with all that gone on. Oh my. Im sending you some healing vibes hugs with so much comfort an support your way πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ‘ΌπŸ‘ΌπŸ‘Ό

If you don't mi'd I'm gone to give you some suggestions to help you deal an maybe ease some of your discomfort.

A lot of your conditions I have but also I would of helped clients an members through out the years.

Firstly just to explain how our oxygen works fresh oxygen eases pain, discomfort, spasms an cramps etc. People think oxygen is only to help the lungs an the brain to function. But it's not. When our body hurts be it through soreness, health conditions physical and emotional. The oxygen turns stail when our bodies have been effected from what reason I mentioned above an this causes the body an mind to be attacked with physical and physical and or emotional fatigue an this causes our physical health issues to flair up. So here is how to resolve this situation an help not cure our conditions but sure will help make them more manageable.

So firstly start training yourself to start using your nose for only breathing in with an doing that quiet slowly and holding it for the count of 3 then just part your lips an just breath out really orbenery an slowly. Your now filtering your oxygen.

So if you do this especially while doing things you won't feel as sore, you won't be as tired.

I know you have so very many painful an restricting conditions going on. So what I would suggest if you have a garden front or back, to sit on a chair an go to youtu.be an Google wheelchair exercise an to keep doing the breathing I just mentioned so when moving for instance in a direction, breath in with the noise slowly, when moving the limbs back sigh through parted lips. This way the grey stail oxygen is leaving the body an the fresh white oxygen that be releasing the stail painful blockages from the body cells creating healthy positive ones.

If you can place the top of your neck an across your shoulders under a lukewarm shower on a strong massage head setting every day an make sure the spray of the shower head the rest the way up your back arms legs an especially inside your legs up to the grinds in a upward position so that the blood an oxygen supply can circulate properly. An dry yourself will also in upwards position as this will help the circulation work properly.

Dress lose but make sure to dress swiftly so you don't get cold. If you have a bath tub an like baths do the very same suggestions as the shower.

If possible if you can get out for some air if your mobile with assistance maybe even get out each day for 5 minutes walk each day for a week just make sure your doing the breathing I mentioned an then the following week add an extra minute or 2 an so on.

If you have a garden maybe try few minutes of gardening say 5 minutes take a breath an then another 5 minutes an do your breathing. I so hope dear friend this really helps you an you will give it a try. I would so love for you to be out as much pain as possible I know how much your suffering.

My prayers friendship an support is there for you. Be well an keep strong. Hugs Ce πŸ‘ΌπŸ˜‡πŸ‘ΌπŸ˜‡πŸ‘ΌπŸ€—πŸ€—πŸ€—

Keepstrong profile image
Keepstrong

Hi sweet friend.

Firstly I would like to say, I'm so sorry you have these horrible conditions like mine, but I also wzbr want to congratulate you on not giving into your health conditions and still getting out there and shown then your the boss an your not gone to stop fighting or giving in an just curling up for the rest your life, well done you should be proud of yourself, I know I'm proud of you for keeping strong and gone. No mater how sma'k you might only be able to do ve it gardening like taken few dead heads off flowers or using long. Stick to poke out some weeds it's still doing out door exercise your still getting fresh oxygen and still using your mind an your limbs, some people don't realise this is all you do to get but of air, movement, exercise and also a clear heqd, because when your outdoors focusing on tidying or doing bit of gardening your actually switching your mind off even for just a few moments an if you can even go for a 5 minute walk even better because again you be focusing on walking an not on your thoughts of what's going on for you that maybe getting you down be it health work family bills just switch off an concentrate on just getting that little walk in an focus on only using your nose to breath in hold your breath for 2 to 3 seconds an breath naturally out through your parted lips. Once you focus on breathing like this while walking, gardening or just tidying your garden then your mind an body has no room or energe to focus on pain or fatigue it's getting to filled with fresh oxygen an releasing stail oxygen cells an limiting so'e of your pain and discomfort an essentialy fatigue. So we'll done keep up the brilliant work dear friend. I hope to chat with you again soon. Sending you vibes of comfort and light, Ce πŸ€—πŸ˜‡πŸ‘Ό

Peder profile image
Peder

tyvm.. only got diagnosed last year. Ive had reflux for about 30 years but It all started with an ear infection in 2016, admitted to hospital for 11 days as i had pseudomonas growing in my ear canal towards the inner ear and inwards towards the brain. it led to very low cortisol and adrenal levels, to a point where i was diagnosed with hypo adrenalism and hypopituitarism. This then led to hashimoto hypothyroidism, cfs and then last year fibro although the hypopit and adrenalism have all sorted them selves out, something to do with the ear infection being transient and affecting the pituitary gland. i was on area for 10 years, traffic for 17 then all of the above happened, so occupational health took away my driving permits, no more driving at 160mph, to driving a desk, reduced my hours to 32 no more than 2 in a row, no more nights so its not all bad... retirement looming in 64 more working days πŸ€—

Hi

Thank you so much for all your support and advice. When I try and go for a little walk I seem to have a panic attack after about t minutes. Any suggestions please? I do try and go for a small walk each day. Love and hugs Lynne xxxx

Keepstrong profile image
Keepstrong in reply to

Hi dear soul I hope your having a good day today. I replyed to both posts an sent also si'e advice on the walking and panic attacks in the posts replies to u up above. I so hope it helps you big time.

The main reason for your panic attacks is fear of your FMS if its gone to kick in an u might fall or trip but by focusing on breathing in with your nose as u take first step hold it for 2 seconds sigh out through parted lips as u sigh out an move the next foot an so on. This will keep your mind busy an that's gone to stop your mind thinking of panic and just be focused on breat in move breath out move an so on, your mind is focusing on all these instructions as your takin in the view around u that it has no room for panic. Please dear friend let me know how you get on trying this and please by all means contact me anytime. We all have to support each other in life and also through this amazing positive uplifting supportive group.

Sending you positive vibes of comfort and supporting light πŸ€—πŸ€—πŸ€—πŸ€—πŸ‘ΌπŸ‘ΌπŸ˜‡πŸ˜‡

Hi

I do always have someone with me, I'm very lucky. How are you feeling today? Take care Lynne

Peder profile image
Peder

I really love this site...I really love the compassion and camaraderie that everyone shows one another.. a mutual respect and understanding that everyone is different with different ailments and yet open up to strangers who may be experiencing problems and are just after advice.It really puts my faith back into the human race. πŸ˜ŠπŸ˜ŠπŸ‘πŸ‘

Keepstrong profile image
Keepstrong in reply to Peder

Hi Peder πŸ€—

What a beautiful uplifting message to us all thank you. πŸ€—

An please do feel free to message me anytime.

Wishing you a happy wonderful day. Sending some soft healing hugs with comfort and light πŸ€—πŸ‘ΌπŸ˜‡β€οΈ

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