Shouting from the bottom of my hole

maud48

Thank you everyone who replied to my last message and sorry this is so long. I’ve been doing lots of reading and thinking about fibromyalgia. According to what I’ve learned it can be brought on by stress and I’ve had a lot of that recently.
In the last 4 years my brother died unexpectedly, he was only 41, my father died. I lost my job which was devastating as it was the first proper one I’d had. Spent most of my life travelling round Africa with my 7 children (2 adopted in Sudan) and my OH’s job, educating my kids, painting, making their clothes etc. – we always lived in very remote difficult places. When we came back to UK I was so happy to get a job teaching art at the university and doing more study so it was dreadful when I lost it through no fault of my own. Because we live in such a small town it wasn’t possible to get another one.
Then my eldest son was in hospital for 3 months with an MRSA type infection and only given a 20% chance of survival (fortunately he did).
My youngest, adopted daughter had a baby and hid the pregnancy until 36 weeks and carried on drinking. She looked after him until he was around a year old, with a lot of support from us, but then we had to take over his care as she was putting him at risk. She’s now living in the same town as us, drinking a lot and get into trouble with the police often, ends up in hospital often. All the family have tried to help her but she won’t take any help. It’s an awful situation, she seems to have become a totally different person – totally self obsessed and selfish and only comes round here when she wants something.
All the other kids, including her twin brother, are doing really well and I really can’t think of anything in her life that would have made her like that.
I also went to Ghana just over a year ago to do some design work. I ended up in hospital with an illness which has never been identified and have been ill ever since. My feeling is the illness and stress have brought on the fybromyalgia.
So here we are my OH and I trying to cope with his job and a 4 year old with foetal alcohol syndrome and ADHD. Should be possible but my body seems to have given up on me. My mind is OK and I’m not depressed but around 50% of the time I am struck by extreme exhaustion and pain everywhere. I also have OA but could live with that.
I really, really want to and have get on top of this but don’t know how. My OH can’t go on doing his job as well as everything else that he has to do when I’m not able to.
I’m not moaning or asking for sympathy, but if anyone has any advice as to how I can get out of his hole I will be so grateful,
maudxx

frogmorton

Maud

You are an amazing woman

Truly amazing.

My step-d's Mum died at 29 of alcoholism - i beleive it is a genetic defect and no-one is to blame. Only they can sort it - you must not feel responsible.

I guessed the little-one would have FAS but ADHD too? You have a huge amount on.

Once you get some treatment for the fibro - things will pick up - have you been to the docs/ Has he goiven you anything (anti-depressants work - not for depression, but on the fibro)? Pain patches can help as can alternatives like acupuncture.


I know others will have more usefull things to say but you have mu admiration and wish I could help you more.

Love
and HUGE hugs

toni xx

PS. Have you finally got your residence order? for the little one? Only saying that so you could maybe look into some form of respite? Priooably stupid thing to suggest

maud48

frogmorton wrote:

Maud

You are an amazing woman

Truly amazing.

My step-d's Mum died at 29 of alcoholism - i beleive it is a genetic defect and no-one is to blame. Only they can sort it - you must not feel responsible.

I guessed the little-one would have FAS but ADHD too? You have a huge amount on.

Once you get some treatment for the fibro - things will pick up - have you been to the docs/ Has he goiven you anything (anti-depressants work - not for depression, but on the fibro)? Pain patches can help as can alternatives like acupuncture.


I know others will have more usefull things to say but you have mu admiration and wish I could help you more.

Love
and HUGE hugs

toni xx

PS. Have you finally got your residence order? for the little one? Only saying that so you could maybe look into some form of respite? Priooably stupid thing to suggest

Thank you Toni for the kind words. I don't think I'm at all amazing but I have managed to cope so far and would again if only my stupid body would let me.
I've got some amitryptiline to be taken at night but it doesn't seem to help much, maybe it will if I persevere.
Yes we got the residence order but social services have been totally unable to give us any help and I've tried and tried. Respite would be a brilliant help as we don't have any help at all where we are, at least it would give me time to talk to my OH as all our time is taken up with the little one. The school gets a full time helper for him but it seems we get nothing,
maudxx

frogmorton

Maud

is there a fetal alcohol support group?

Does he have a community nurse or anyone involved?? They can be good for getting respite.

Yes persist with the amitrip at night - it seems to work better over time and one of the worst things with fibro - is the exhaustion from lack of restful sleep.

Love

Toni xx

dorcas

Hi Maud,

I agree....you are a truly mazing and resilient person to have coped with all that's been thrown at you. I know you are not looking for sympathy but you are carrying a lot of pain and anxiety. Would you consider counselling to help you through this time? Having someone to offload to who isn't part of the family can be very helpful.
You could phone our very own helpline peeps, who I'm sure would be able to offer some support and perhaps suggest further options?

With regard to lack of support from social services...I am appalled. :shock: they have a responsibility to the little one ...and you, and in these circumstances should be offering assistance.
As a 'family carer' you are also entitled to financial support....the term used in law is 'kinship care'. I've posted a link for you to look at which will explain what it means and also the financial support you should be receiving. Although this is a Scottish site there will be similar UK ones.

http://www.adviceguide.org.uk/scotland/your_family/family_and_personal_issues_index_scotland/kinship_care_scotland.

I will be thinking about you Maud; sending you strength and love.

Iris x

airwave

I hope you find some sun along your path.

8) Its a grin, honest!

sharmaine

Hi Maud

Wow! What a story. Sorry to hear about your problems and I hope someone will come up with some good advice for you. I have OA and coping with that is bad enough. You make me realise that my life isn't too bad.

You can only pray that your adopted daughter gives up the alcohol. She has to accept the help first. Can you get any support from the Social Servides? You might be able to claim Disability Living Allowance have a look online. The Citizens Advice Bureau may also be able to give you some tips.

Have you told your doctor about your exhaustion? It sounds to me that you are suffering from fatigue. It's time somebody took care of you.

I hope that you get some support and your health improves.

With regards,

Sharmaine

elnafinn

Hi Maud

Unfortunately fatigue goes hand in hand with fibro, as I understand it and I am at a loss to suggest ways in which this may be overcome, especially with your lifestyle. It is easy for people to say rest, but you have so many commitments, that is impossible or impossible for you to take enough rest.

Have you joined a fibro forum, because if not, you may well find much more help on there than we can give you, specifically for this diagnosis.

Luv
Elna x

tillytop

Hi Maud
So very sorry that you are having to deal with such difficult circumstances in your life. I don't really know what I can sayexcept to echo the words of admiration which others have posted and to say that I am thinking of you. I really hope that you are able to find some effective help for your Fibro - which will at least make it physically easier to deal with some of the other issues you are facing.
Lots of love Tilly x

skezier

Hi Maud,

I also think you have done so well cus this is a shed load of things that have gone wrong for you. I am sorry about the fibro and do hope you can get a bit more help with it. I think the fatigue is sadly what it does but people say about pacing your self and maybe if you can do a bit, rest a bit and do a bit more it will help you to get through a day easier? There is so much info about but some of it does seem to be contradictory. The helplines here might be able to hep if you ring them on Monday (I don't think they do week ends) and well leaving you a ((( ))) and a hope it will have less fatigue there for you soon. Cris x

woodbon

Hi, I only wish I could offer some help - all I can say is you are an amazing person. I hope that your GP is giving you lots of support and checking to see if any drugs can give you more help.

Love Sue