Fibromyalgia Action UK

It has been about 2 years since my last post!

Hi Everyone I no I haven't been on here in such a very long time. I contacted PIP last year when I was diagnosed with Autism, then it took me a very long time to get the forms back to them as I was in and out of hospital last year with kidney infections as well as stomach and sickness problems. The longest time I was in hospital for was 4 weeks and 2 days, I was then discharged and a week later I was re-admitted again with the same problem. While I was in for that long period I ended up on an NG feeding tube as I was unable to eat or drink anything. As the smell of food just turned my stomach. It wasn't a pleasant experience getting the NG, I told them that if it ever came out and I needed another one in they would have to sedate me. As it would be to traumatising to go back through it again.

After I managed to fill the forms in and return them, my sister came with me for my second assessment and now I am on Enhanced Rate of Daily Living and Enhanced Rate of Mobility. Which is grate. Also because I've been diagnosed with autism I have a Social Worker who is great and has managed to get me support when I live. As I now live in a building with other flats which is great as there is always someone to talk to and I can be very sociable when I'm well enough too. Plus I live right next to the Mission to Seafarers in South Shields, as the building I'm living in (at the Mill Dam) actually used to belong to the Mission before Isos took over it. As this building used to house people with Mental Health problems. Now it's mixed with people who don't have Mental Health problems and people who do have Mental Health problems or just need that extra bit of support. Once I'm upto date with my rent which is extremely cheap £7.20 a week!! I will be able to start to get support. What they will do is help me with keeping my flat tidy as I really do struggle with that A LOT!!! Also help me budget as I no how much I get and I try my best to pay all my bills. But when I no I have spare money I usually just spend it and then I can't remember where it has gone to. I always seem to save my money when I'm unwell as I never go out. Where today I've just spent £70+ on Amazon but what I have bought I've been looking at for ages and a doctor I was chatting to in A&E said that it might help me.

As I'm pretty sure my immune system is shot at the moment as I've not long gotten over a kidney infection that I had since Boxing Day 2016 till 12th January 2017. A very long time my highest temperature was 40.5'c now I'm trying to get over a cold and a chest infection, as my GP has taken me off all of my inhalers as my Peek Flow is all over the place from my she asked me to record it for 2 weeks every morning and every evening around the same time. I need to do a Asthma Test with different inhalers, but I have had to cancel the appointment twice now due to this dam cough. As I was chatting to the doctor at A&E (as my GP didn't have any appointments, if I needed to be seen that day I had to go to the nearest Urgent Care Centre, which is located at my local A&E), so the doctor has put me back on the blue inhaler but it's not helping at all. So when I was chatting to the doctor I was telling her I was looking at getting a Nebuliser to see if that could help me breathe better and help get rid of all this crap off my chest. She agreed and said that it sounded like a good idea. So I have just bought one today on Amazon for £34, as I did look in lloyds pharmacy first but the same one I got off Amazon was more expensive but an extra £10. Plus you can only get the liquid on prescription. So I am thinking if I try it and find it works better then the blue inhaler then when I see my GP next month I can speak to her and see what she says. Maybe she will agree to do a trial bases on some nebuliser steroids to see if it helps. As I've tried using my spacer and that's not helping either. The doctor I saw at A&E said my lungs sounded crackly but I'm surprised she didn't request an X-ray of my chest as I explained I've been coughing up green/brown stuff. I had a cough last year which was viral so my GP told me but it last nearly 10 weeks. I was sick of my life and very thankful by the time it went.

Does anyone know how I can change my email address on here as I have changed it that's why I don't get emails on notifications anymore nor can I remember my password. As I had to sign in via Facebook.

Hope you are all well.


5 Replies

Hi Susan20067389

I sincerely hope that you are feeling as well as you possibly can be today, and it is absolutely wonderful to hear from you my friend. I am so truly sorry to read of how poorly you have been and that you have suffered and struggled so much. It is wonderful news to read about your enhanced PIP and your new flat.

If you click on your image / username at the top of the page, and then click 'Account Settings' it takes you to your account page. About 3 /4 of the way down there is an option to change your email address.

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken x :)

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Sorry that you have had such a rough time. The new flat sounds good though. Many people here myself including struggle with a catalogue of autoimmune and other conditions which the doctors don't seem to be very good at treating. It seems to go genetically with autism (one of my sons is diagnosed another will probably be later) and I have many autistic traits.

It sounds like your body has been through a very tough time lately and it may take a long time to feel better. Making sure you get enough B12, vitamin D, ferratin and folate are very important for recovery and the doctor can easily test if you are deficient and monitor your treatment. I have asprin sensitive asthma and do better with non standard treatments. I also do better on a FAILSAFE diet ( which helps but needs to be undertaken after very careful consideration and perhaps just doing the basic no colours or preservatives as the risk is you lose the tolerance to many fruit and vegetables which you have built up over years and is very hard to go back and it means the diet is not necessarily healthy. It is also poorly supported in the UK especially by the medical profession.

Good luck

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Hi Susan. Nice to meet you. I was wondering if you could write down a few of the things you would like to improve in your life and show that list to your support workers. They will probably help you work through your list. Money for instance. There are lots of ways of keeping a check to what you have spent and making sure that the things that you have to pay get paid. I am sure there will even be an app for it.

You sound an interesting person so good luck with getting more helathy and making friends of course.


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Hi susan,

You have been through the wars , Its nice to hear that you are on the mend , I have asthma i have had since i was 4 years old but only got really bad when i was around 30 years old after a severe cases of pneumonia and pleurisy , a couple of years ago they discovered that i have another lung condition, I have a home nebulizer and I get medication for it from my GP for it but I still have my blue inhaler for going out , and my preventer steroid inhalers as well as tablets,

I wish I had thought of looking on amazon for a nebulizer mine was 200 although my first small one was 60.00 but as I use it at least 4 times a day my small one didn't last long .im now on oxygen 24/7 but this has only been since October as I was in hospital most if last year from April until 7th October, it was like i only came home for a visit then back to hospital again lol all is going well for now although I was at doctors yesterday and have a bad chest infection so back on high dose steroids and antibiotics.

You seem to be doing well with your flat and now getting help that must make such a difference to you .

All the best take care

Loraine x

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Hi there ive been diagnosed Autistic with Asperger's it does have some great sides but some awfully weird sides also to it and we seem to share some of the traits im never tidy myself!

Quite a few things are part of autism as a process issue like feeling cold i often don't feel the cold but am freezing unless a draught then Raynauds goes to town!

There is a good place The Autism society London N1 that does/has many things from info to classes not been there myself yet.

The trouble with breathing issues if you don't fit into there little box they often just leave you to it/ignore it! have plenty of it myself sometimes i can be ok other times things set it off or does it's own thing.


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