Spoons! Support for those with chronic pain & fatiguing illnesses

[Grockle]

Spoon Theory here

Weegiemum I can laugh now but a few months ago, I fell over in the street and could not get up for the life of me. I had to be heaved up by 2 people who seemed to struggle. I am by no means skinny thanks to high dose steroids, lack of movement and an unhealthy addiction to crisps. The humiliation of needing to be lifted made me a.) seriously reduce my crisp intake and b.) agree to the stick!

reminds me of the time I fell out of my electric wheelchair when I was trying to go up a kerb, it had a kerb climber but I wasn't straight on and it tipped over! if that wasn't bad enough I had the lap belt on so I was sort of dangling there. About 5 people came running over to help me up, it was so embarrassing!

Gallifrey that must have been so uncomfortable as well as embarrassing. Weegie you must be covered in bruises. Is your ankle better? Hope your treatment goes well today.
My mobility is very much better than it was and I am mostly OK on a flat non bumpy surface. I use sticks for balance but not now in the local high street where I know the slopes and bumps. I did have one seriously embarrassing wobble when my dizziness caught me off guard and in a blind attempt to catch myself I grabbed at the person next to me, a very formal gent. I dread to think what he thought was happening! My main problem (apart from heavy breathing) is not falling over but fainting- or nearly fainting ( losing all but a bit of hearing), so I tend not to find the bumps till later.
Crashdoll I think I share the same unhealthy addiction.
I was taken for a pensioner (buying a ticket) recently ( sob), admittedly the volunteer must have been several decades older than I and may not have had the worlds best vision. But I am wondering what action to take to look and feel my (below pension) age again.

Gupta process.

I am sceptical too. I don't think this is a straightforward psychological illness. But after having PTSD where loads of physical stuff was rooted in the trauma, and having treatment that made my body relive the event and then process it appropriately, I am very much aware that the brain is not simple.

I do believe that part of my brain could be making my system run on 'high alert' at inappropriate times, which could be leading to exhaustion. And the exercise intolerance could be (?) because of adrenaline stored in the muscles being used because my normal adrenal function is shot to pieces.

Tests have not shown that I have weird cortisol levels though. I don't know. The free Gupta videos on YouTube seem okay, and I'd rather pay £117 for DVDs I can keep and use over and over at home than £400 for the Lightning Process which would involve going out to appointments.

Am considering it, but probably won't do anything until I've had the treatment for intracranial hypertension...lumbar puncture followed by ballooning a vein which has narrowed. Complicated, slightly risky and somewhat experimental stuff, but I feel lucky to have any options at all, really.

I think the Lightning Process is more than £400 now; it was that price about 5 years ago when I was first told about it. I think its about £600+ now.

Building I went through a really badly abusive marriage in the 80's and have only just realised over the last month that I probably had/have(?) PTSD because of it. I never considered that it could all be linked tbh.

Oh building so sorry about the intracranial hypertension -but hope the treatment works well. Do you have to wait long?

The Gupta theory sounds feasible (especially combined with other theorys which it does quite nicely) its the treatment I am not sure about. In all fairness he says much the same. Still I am making my way through the free youtube sessions which so far are explanation only and may very well buy the DVDs. I suspect that going the whole hog and going in for the face to face sessions would be best but I doubt I have the energy never mind costs. I know I improved whilst on the weekly mindfulness course I did despite not clicking with the psychological theory or feeling well during the long sitting meditations. I think it was the social side (before and after), face to face contact and the non energetic getting out and about that helped. If I get the DVDs I will keep you posted. I am quite sure my brain is misbehaving, and long term hypervigilance (sn child) may have been a factor. Many of my symptoms are down to dodgy autoimmune, autonomic and control functions, what I am not sure about is if it is just the Amidulla that is malfunctioning(in my case). Still every little helps!!

I do feel the D Ribose is useful for improving energy and lightening my legs along with several other things, but it may not help for others. I have just ordered some more.

I'm not too sad about having a possible concrete diagnosis of a physical cause with things they can actually do, tbh! Much better than a mysterious 'autoimmune disorder'...or indeed the muscular dystrophy that was suspected.

Don't know how long I have to wait. Had a LP last year to see if it helped (it did) and waited about ten weeks between deciding to have it and actually having it. During that time I could hardly sit upright for more than an hour or so. Hope I Don t get that bad again but am struggling ATM.

Thanks folks. I had an incredibly hot uncomfortable day in hospital today (south facing ward, fans not allowed any more!) but got my IVIg treatment so at least it's over. I've now hit the fatigue wall, which will continue for about 48 hours or so.

I hate this so much, but today I met a woman on my ward who was next to me - had just been diagnosed with my illness and so I think I was able to help a wee bit.

And while I was out my washing machine broke and leaked everywhere.

Oh no! Do you have the sort of insurance that sends in specialist cleaners?

Fellow spoonies, please could you keep your fingers crossed for me? It looks like me being part of this clinical trial might go ahead.

First-in-human trial of a new drug for rheumatoid arthritis

Researchers at Kings College London are reaching the culmination of fifteen years of work by carrying out the first in-human trial of a new treatment for rheumatoid arthritis. If successful then the two year trial will show that infusions of binding immunoglobulin protein (BiP) will enable the body?s own immune system to help protect it against rheumatoid arthritis.

BiP is part of the body?s normal anti-inflammatory response and although it is found in the joints of people who have rheumatoid arthritis, there are insufficient quantities to have a therapeutic effect. Research already conducted indicates that giving an intravenous dose of BiP will quickly boost the patients? anti-inflammatory response and will likely also reset their immune system to give a long lasting effect.

?If BiP works as we expect then a single dose should be sufficient to put patients into remission for months,? says Professor Gabriel Panayi, Professor Emeritus of rheumatology at King?s College London.

That's exciting Crashdoll. Fingers crossed for you. I do hope it works for you and for others and then on to other illnesses. RA is such a horrid illness.

Building I understand. It is far better to understand what is causing your illness and have specialists that know how to work with it. I have come on a long way since understanding some of my unpredictable symptoms (the keeling over) are due to PoTS. My heart is healthy- its the control mechanisms that are dodgy! Now I know that I can work on it. I have been working on building up strength and flexibility whilst already on the floor (don't get dizzy laying down). My logic is that maybe once I have the PoTs under control the CFS will recover more. There is a way forward - rather than the hopelessness of uncertainty and incurability.

Has anyone experienced hair loss? My hair is coming out in handfuls and I have a bald patch at the back of my head :(

My nan died today :(

Apparently she may have had a stroke this morning. Dad said she was very unresponsive when he visited earlier. He left when visiting hours stopped as she seemed stable but they called him back later, and by the time he arrived it was too late. It was peaceful though. And she has been 'ready' for a while.

I am sad I didn't get to see her - I was working today and wouldn't have been able to get there on time anyway. But from what dad was saying about how she was earlier, maybe it's better I don't have to remember her like that.

Don't think it's really sunk in yet. Sorry I was going to reply to all the other posts but my brain won't really let me settle on anything right now. Going to distract myself with TV.

Oh, fuzz, I'm sorry.

It is so hard to lose someone even if it was time.

So sorry Fuzzpig.
Gallifrey I have intermittent hair loss but have not found a way to fix it. It comes and goes.

oh Fuzzpig I'm so sorry for your loss xx

Lots of love fuzzpig

So sorry Fuzzpig xx

Those of you who work, can I ask what you do and how you cope? DH is self employed and we really could do with a little extra income, just a small amount of regular income rather than dh's erratic income would help.. but neither of us can figure what I could do or how I'd cope.. I haven't applied for disability benefits as I'm positive I won't get it. We just feel a bit trapped in a vicious cycle as I'm sure you'll all understand..

Daisy I'm a prison officer though I'm taking redundancy. I have realised over the past month that I can't cope any more :( and I'm hoping to get a stress free job somewhere.

I work freelance as a researcher in my field of expertise which I enjoy, but it is too stressful. Am scaling back after this project.

Thanks all xx

Sorry to hear about your nan fuzzpig

So sorry, Fuzz. Thinking of you today, with love x

Fuzz..........sending you my condolences. xx

Daisy I now only work one day a week, in a hospital after not being able to return to my pre illness hours. It has taken several years to get to manage a whole day. I could do with doing more now ( well earning more), but I think my employer would have to be very sure I could cope before giving me more than tempory extra hours. There is no way I could work full time now.
I have a friend who now writes novels, travelling around to get material. I doubt it is financially brilliant. She also teaches the piano from home.