I don't know what I am supposed to do about this, I absolutely cannot bear being freezing cold, my hands and feet are like blocks of ice, I'm in bed with whole body agony with fibro and can hardly move because my lower spine feels like its breaking, legs are weak and heavy feet and ankles feel like every bone is superglue together and someone is trying to snap them, and the feet are ice cold. It doesn't matter how many pairs of socks I put on, and how many covers I have on me, I can't bear it, its so bad that him exhausted but the cold stops me going to sleep.
I am single mum with 3 boys and the eldest one terrorised me and the other two children, I'm waiting for Great Ormond Street to give me the results of his tests but I think he will be diagnosed with ASD.
So I'm trapped freezing, being terrorised, in excruciating pain, trying to stop a control freak giant teenager from terrorising 2 younger children, and acting like a human shield. Oh and my little one has Autism. Oh and the big one has loads of sensory things going on, he won't let me have the central heating on, and has all the windows open throughout the night, and a fan on himself causing grief to the 2 other children as well as the freezing cold me.
Oh and to carry on my moaning my PIP renewal was done early and they've taken off points so Im teetering on the edge, 8 points for each. They lied about me, said I could walk when all they got me to do was stand up from a sofa and try to touch the floor, I never even took 1 step. They said I can plan and follow unfamilar routes unaided, and that I made good eye contact and communicated well....I have Aspergers Syndrome and I find all of that very difficult and can't do that. I ask for mandatory reconsideration and they did it and gave me no difference in award. I give up 😤.
Moan finished.
Does anyone suffer this freezing and is there anything at all that I can take to change it, drug wise? Thanks, Claire
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Claire133
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Thanks for the reply, no one has told me that I have circulation problems, but I know I have low blood pressure at 106/60 and what sounds madder, is that due to very bad migraines to do with blood flow in my head, I now have to take Propranolol, which will lower my blood pressure further.
No I don't get any help, my parents really couldn't care less to be honest, my mother is too busy looking after anyone and everyone's children....as long as it isn't her own grand children 😂 I have to be sarcastic about her otherwise I'd go insane.
Its same with me about the feet and the hands being the coldest, I do get a bit of bluish tinge to my legs sometimes so maybe I will talk to GP. I'm seriously considering buying a skiing snowsuit to sleep in, it could look quite funny but it might do the job ⛄
Wow, you have much going on there. Jolly well think you're entitled to moan.
I wonder if there's any support group locally. Sounds like you do with some physical help. Can you appeal or complain, perhaps with the help of Citizen's Advice Bureau. Certainly sounds like they've lied which is unacceptable.
Do you have enough bedrooms? If 1 wishes to be cold, then can he have a cold room separately? It's clearly not fair to make the rest of you suffer, but I bet it's not that simple?
Ah thanks, i really needed a moan tbh. There's no Fibro support groups in Watford thatch can find, I did join online with Gingerbread for single parents, but I haven't gone to a group because there's no child care, but the worst part is, I can't get the children to go out of the house, they don't like being near other people and have social interaction problems, the big one point blank refuses to go anywhere unless its his idea, but even when things are his idea, he kicks off in front of people.
I don't have enough bedrooms, im in a small singleroom and 3 boys sharing a big room. Its got that bad that I have used a rebalancing overdraft of 70k thanks to Herfordshire Country Council refusing a Disabled Facilities Grant for the 2 problem boys, when I know they are entitled to it. I've borrowed the huge amount of money with no feasible way of paying it off, and I have builders right now here, building an extension so big one can have his own room n blow himself to oblivion with a fan and the windows open in the blistering winter that we are probs going to get. Big one has also requested the radiator to be removed from his new room, so I said "of course, enjoy" 😂
Thanks again, I feel a bit better now after my moan xx
Hope it helps and hope the work helps too. Can you appeal county council decision, and again I realise this will take up a lot of energy. Social interaction difficulties are hard to overcome. You have my sympathy. I'm surprised the council allowed 3 children in 1 room. I know there are rules for councils, but they don't apply to private housing. I assume this is your case. It's also true councils are stretched.
You do have a lot on your plate Claire133 . Do you have contact with Child services and a support worker? Is there any opportunity for your eldest to have respite care? I certainly think you should be getting more help with the eldest boy as it is not fair on the others and you when he is bullying everyone. You need to be very assertive with your doctor and ask for help with his behaviour.
If there was a suggestion that he be sent to a special school for children with behaviour problems, would you be okay with that?
I would make an appointment with the Citizens Advice and see what help is out there for you all.
I think a fluffy onesie would be ideal, but don't get one with a tail or you won't be able to turn over in bed!
I would speak to the doctor about medication for your continually cold extremities and also to have a thyroid function blood test to rule out any problems there.
I wish you all the luck, you have a hard road to follow.
Thank you for your reply, Idefinitely think a fluffy onsie is a good idea, I had 2 but I've got so fat now due to not being able to move, and medication, that I can't fit in them, ill have to look for bigger,I've put 5 stone on.
Oh unfortunately my eldest couldn't go to a specialist behaviour school, you need a statement of educational needs or EHCP plan, and he has impeccable behaviour at school and is working sky high above the national average so no one would dream of giving him an EHCP. I've visited those behaviour schools when my youngest Autism was so disabling that he couldn't function on mainstream, my LA has zero schools for Autism so they try and shove children into EBD to their detriment 😢. The School I saw was horrific and my small one is shy, quiet and non verbal, it would have been catastrophic for him. I took them to Tribunal and won and he's at private school now and doing well. That's why my Fibro got out of control, because the LA just finished me off.
I'm afraid I wouldn't go near children's services with a barge pole, they're part of the LA and in my area they tend to point blame at parenting when it come to Autism because its all about the money; they don't want to pay for independent schools for children in our area, but they don't actually have any provision to meet their needs. The result is so called professionals clubbing together, lying about parents, writing incorrect information and basically twisting things. I'm on a closed group for this area and I've advised so many parents as I've been through the SEN battle, I see parents daily, at their wits end and most of the stress is from the LA not the SEN children's needs.
So I'm waffling on, and you can probably see why and what caused myFibromyalgia to be so bad..stress..and more stress 😥.
I can truly sympathise with the being cold all the time. Even in the summer my feet are like blocks of ice.
Is it possible for you to get an electric blanket at all?
I also find that if I have got seriously cold. a very warm bath helps.
As Kay has said, do you have any help from Social Services with your son?
Have a word with Janet, our Benefits Adviser regarding your PIP. She may be able to advise you if there is anything more you can do. I will pop back and give you a link with all of her contact details on it.
I am so sorry that you are going through so much at the moment.
Ah thank you Lu, I will definitely contact Janet, the benefits advisor, I hope she can help because I know my award is wrong, but I'm almost all out of energy, and nearly gave up.
Ooh I definitely wouldn't go anywhere near Social Services, but thanks anyway, I seen them do too much damage to other families that I know with SEN children 😥 x
Oh Claire133 , I'm so sorry your feeling so bad and going thru so much.I hope all gets straightened out soon.Please take care of yourself. We are always here if you need to chat.Be blessed. Peck.🐤
Thanks Peck, I really appreciate everyone commenting today, I hardly ever post because I just plough on and muddle through. Just needed a good moan today; definitely feel less stressed tonight 😊
So sad to read your post. I want to be there and give you a big hug I honestly don't know how you are coping withal the problems you have you must be very brave. This site is where you can be honest and get everything off your chest and it isn't moaning we all have those days where needed the support of others as they say no man (or woman) is an island we all need to speak to people who understand. We can't share your load but we can be there to listen.
I can commiserate about the temperature problems my thermostat is either stuck on booking hot or freezing cold it has lost all the degrees in between. A the moment in thick, long sleeved Jim Jams with a long fleecy dressing gown and a thick blanket with getting on and I still can't thaw the old blocks of ice the other people might call feet. I can have cold hand or feet even in summer where the rest of me could be boiling. My best friend in the winter is my electric blanket I wish I had had one years back. A greedy onesy sounds like an excellent solution.
Do hope Janet can help you about the PIPs you really need the extra money by the sounds of it.x
Awe thank you rosewine, I certainly do feel like a one man band (but a girl lol), you know the ones, all singing all dancing, brass symbols between the knees, a harmonica dangling to one side of my mouth, fog horn in one hand, banjo in the other, bicycle horn round my neck, haha.
Really good to just talk and get it all out for the day 😀.
Oh the feet and hand blocks of ice, are just horrendous. Its exactly as you be just said, its like a thermostat that's gone crazy, I'm exactly the same in the summer, its madness,vile can be boiling hot in 30 degrees but the hands and feet are ice, and I get goosebumps shivers all at the same time. Its just utter bonkers. I'm actually in limbo wondering what to do because my house has concrete floors on the ground level and when my extension is finished, I was thinking of putting wood floor down to make it easy to clean because I'm in so much pain with my back, and in agony bending, I can't get on the floor and up again, so I though "yay wood floors to sweep and steam with little effort" but now I'm thinking "omg I'm going to be utterly worse with the ice feet and ankle pain", I wish I had some spare money to put that underfloor heating down, I've seen it on the flat pack home programme and it would be perfect, but alas its out of my budget 😢, I think its got to be 10 pairs of socks with those antislip patches for me 😁 x
We have just had a laminate floor with an insulated kind of underlay fitted in a room we have converted from a single skin workshop. It was laid on the existing concrete floor and certainly seems warmer than many laminates I have walked on but underfloor heating would have been great but we couldn't justify the expense.
I want to know who is playing the keyboard in this band of yours?
Well my tootsies are now slightly defrosting after an hour tucked up under a duvet, counterpane and a doubled over pure wool blanket. I have decided this is the time to attempt to find that elusive 😴😴😴😴😴 so nighty night.x
Hi Claire133 my heart breaks for you. How on earth are you supposed to manage on your own. I cannot give you any better advice than my friends have already but if you just want to rant or need support then we are always here for you. Good luck and take care xx
My hands, feet and nose are always cold and I shiver a lot. The cold makes the pains worse for me. I've always been like this since I was little and relatives used to joke that I must have healing hands as they were great to put on foreheads for bad headaches...lol! My OH never feels the cold, turns the heating off, puts a fan on in the bedroom and window open! While me...cosy pj's , fleecy robe, socks, bootie slippers, hot water bottle, blanket...and the dog!
I really am so genuinely sorry to read of how you are suffering and struggling and I want to sincerely wish you all the best of luck. It must be so difficult for you with having so much to contend with? I do not understand your local authority not helping you? Please take care of yourself my friend.
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