Need Some Advice please

[pixiedoodles]

Hi all,
I am normally a silent forum member, lots of reading but a bit shy to comment

I am really looking for some advice if possible please-

I have been studying for a Forest Schools course for the last year- for those who dont know it a qualification that includes teaching forest skills to kids and adults and involves strenuous, outdoor work using tools etc. ( I wasnt to bad when I started and managed although painful and took me weeks to get right again)

My HMS is getting progressively worse, I cant grip things properly, my knees give away and hurt like crazy most of the time as do my elbows, hips and everywhere else. Some days getting out of bed is a struggle! So along with my reynaulds problem- things are a nightmare!

My question is what do I do about my course? Do I continue in hope I improve or finally admit that I am not a strong as I want to be and gracefully give it up- I worried that I cant complete the physical side and that if I do I will be in pain and do lots more damage in the process.

I am so confused and worried- its a big step for me to accept my limitations

Its been really hard to write this and admit these things, I just wanna be fit again and feel like I used to! Because I look 'normal' its so hard for others at see.

I am waiting for referral for consultant or physio and have been for a while.

So sorry to waffle on, but any advice or thoughts would be really appreciated as you guys know what I going through.

Thank you for your time x x

Em x

[Kattykins]

Hi

You know that no one can really answer this for you don't you? But perhaps we can all help you get to the place where you can decide for yourself.

Have you done a google for the spoon theory? It is a wonderful way to visualise what is happening to us - what it is actually like to live with a condition such as ours. Originally it was used to help our family and friends understand but I have found it vital in my own understanding.

I am 54 now. I have always loved the outdoors. I love walking and gardening and birdwatching ............... oh well you get the picture. I was so glad when we decided to buy our last home in a beautiful part of the world, just 5 minutes walk from the open countryside. There is just one problem though - since we moved here my condition has deteriorated and I can now no longer walk for 5 minutes. I have always been fiercely independent and I just don't want strangers helping me to stand up when I can't manage it. I don't want strangers picking up my shopping when my arms give way and it all goes over the floor. And I most certainly do not want to have to use a wheel chair to go shopping. (Although it was great fun playing dodgems in Tesco's the other week!)
I want to be able to cook my own meals - I have just had a new kitchen fitted and I did not design it just to use the microwave!
And just like you I am fed up of hurting, of feeling exhausted, of bits of me giving way, of being treated like a little old lady when I refuse to be middle-aged! And I am sick of people telling me of other people who "had the same thing and they got better in a couple of weeks so why all the fuss!"

I work full time as I am now the breadwinner - my husband has a disability and is unable to work.

But do you have any idea how many spoons it costs me to rant against life?

A couple of weeks ago I went to see my GP and asked her, quite tearfully, when was I going to get back to how I was 18 months ago. I didn't get the answer I wanted. She told me that it was highly unlikely although I may get a few "better" days but the reality was likely to be that I would have "worse" days.

And so I decided to cut down on the spoons I waste screaming that it isn't fair. I am going to try to enjoy the spoons I have each day and not fret about the spoons that I don't have any more.

Somehow or other you too are going to have to come to terms with what is happening to you. But you can't do that without a proper diagnosis. It may be that with physio and splints etc you may be able to get someway back to how you were and you may find that you can cope with your course. Or it may be that you need to find new ways to do old things! Have you discussed your difficulties with your college? They may be able to help you find ways to cope in the short term at least!

I have snazzy knee braces that help a lot, I have splints for my hands which are wonderful, I have a huge collection of drugs - painkillers etc - all of which help me to manage a bit better. And I am trying so hard not to waste my energy fretting over what I can no longer do!

Now I do understand that your situation as a young person is so much more difficult than mine as a 'slightly' older person. My daughter is waiting for her diagnosis and I do worry about how hard life may be for her! But there are ways of coping better with all this and you WILL find what they are!

Sending you loads of hugs and a few extra spoons for today. You were very brave in being open with us and I respect that - it is so very hard to say these things isn't it?

xx

[paw]

I agree that to some extent we have to accept our condition and be realistic that it isn't going to go away. We can do some things like braces and pacing and using aids like crutches to manage but we can't undo the damage of injuries we suffered along the way.

You know your own body and the requirements of this career. If it is too strenuous you may cause serious damage to your joints and make your life a lot more difficult. Personally I wouldn't stick with something that could end up making me a lot more disabled. I need to be able to sit and I have days when I can barely walk around my home. You might be able to do this but are you managing okay or just dragging yourself though it and collapsing when you get home?

Just think about it and try to imagine doing this job and how it would affect you. If you think it's a good thing stick with it. If not, then look for something that won't be so hard on your body.

[niccysearle]

I can relate to your problem with that decision....let me explain why.

I have worked with special needs children for the last 7 years or so and also did training on Forest Schools, which I was incredibly passionate about. Unfortunately the children I worked with were more and more challanging (physically volatile in aggressive ways) and I got to the point where I had to say "enough is enough, I can't do this anymore!" I left working in SEN schools and now work for Children's Disability Services for the council. In the last year my mobility has decreased and my pain has increased to the point where I am strapped up/using a walking stick, constantly on painkillers, seeing OH and having to make changes to how I work and who with....but at least I am still working in the area I love. (Who knows for how long, but I just intend to make the most of it whilst I can!)

All I can say is that you know deep down whether your body can take something or whether you are going to make things worse.......and much as you seem to love Forest Schools, is it worth damaging yourself and suffering for it in later years? I wish I could have continued in my chosen line of work, but I have had to be flexible (no pun intended) and put my health first....not easy but I suspect probably the right decision!

Good luck with whatever you did/do decide to do.

Gentle hugs from a fellow forest loving bendy!