what am I able ( if anything to claim for)

[Lemrac66]

I am retired age 66.

diagnosed with systemic mastocytosis

and myloplastic syndrom.

pluss other health conditions

was wondering if I could claim pip

thank you for your time

[JayCeon]

Hi Lemrac - sorry, just me again. I have 3 kinds of disability, but I'm not in the UK. However PIP assesses your dis/abilities, not your diagnoses. So if you feel you are limited, try.

There isn't anything on this forum about PIP yet , so this is information I found on other forums/websites.

This is info for 2022 cambridgeshire.gov.uk/asset.... (Generally in future years you'd need to scroll down on this page cambridgeshire.gov.uk/resid...

This is an older version of the "Benefits & Work Guide" from 2013, but it was recommended in 2019 for some reason: kickingtoryassonwelfare.fil... This is the actual website it was from: benefitsandwork.co.uk

"Layman's guide": drive.google.com/file/d/0Bw...

A link to a good step-by-step-guide from 2018 (actually re. mental health) is dead, but maybe this site is similar: mentalhealthandmoneyadvice....

Government page: gov.uk/government/publicati...

If you need help in filling in, look here for benefits advisors: advicelocal.uk under "Welfare Benefits" or a local registered charity etc.

If it's turned down, you'll probably want to appeal, as 75%(??) of appeals are successful, here is a free download guide for that: advicenow.org.uk/guides/how...

Or "Mandatory Reconsideration": assets.publishing.service.g...

As you're retired you won't need ESA..., but just in case someone else is interested: bristol.gov.uk/documents/20...

[MadRed13]

Hi Lemrac66, Have you looked at the Facebook group of the UK Mastocytosis Support Group? It is much busier and you may find answers to your questions more easily. Thanks to JayCeon for keeping you informed. It is very quiet on this forum, it still hasn't really got going a great deal since we had to change from a previous format.

[Lemrac66 in reply to MadRed13]

Thank you so much for that.i will look in to itToday I not good .health.depression etc.

Very down

Thanks for your help and advice

Lemrac 66

[MadRed13]

Hi, I am 66 as well and have been receiving PIP since being moved from DLA that I was on for a long time. I have indolent systemic mastocytosis alongside other health issues. As you are retired now you will not be able to claim PIP as it is a new claim, but you can apply for Attendance Allowance. I am sorry to hear that you are having a very down time but I can understand that you are feeling that it is all so much to cope with. Hang on in there and take it one day at a time, it is okay to feel fed up, we cannot be strong all the time.

[Lemrac66 in reply to MadRed13]

Thank you for replying what is attendance allowanceI have systemic myototossis. And myloplastic syndrome.its been going on since January.

The hospital handed me over to guys hospital last month.

I have a phsycologist phones me every 2 weeks .

My doctor phones every 2 weeks..

I have a social worker in back ground .

I feel everything is coming to a head.

I never used to be like this .was busy with work.and everyday life.

Sorry to go on...just people don't understand

Lemrac 66

[MadRed13 in reply to Lemrac66]

Attendance Allowance is the benefit available once you are of retirement age if you are needing care support and making a new claim. You might find the Age UK website helpful, they have a section on benefits.

It is so hard when your life takes an unexpected and unwanted turn like this. I too was very active prior to all this starting. Your social worker might be able to help with the Attendance Allowance claim. I have had many years to come to terms with it all but have had to contend with new problems along the way. I have a Clinical Psychologist who I now only speak to six monthly but she was a massive help in the past, just knowing she was there.

Hopefully Guy's will be a big help - this is where I am cared for and It sounds great to have a doctor who calls you - my GPs change so often that they don't know I exist if I am not sitting in front of them and know nothing about my mastocytosis.

[Lemrac66 in reply to MadRed13]

So true what you say how things can change. And get other conditions on the way.Asked myself so many times why have I got all this.

But got to big strong if you can .nights can be very tough when you can't sleep

Many a night I go around the clock.

Thanks for advice red

[Lemrac66 in reply to MadRed13]

Thank you for your reply I try going on face book but not very good with that.

Can you or anyone advise me please on this thing called brain fog.

It's starting to annoy me and I getting very anxious with it.finding it frustrating .

Best way to cope

Can anyone advise me please

Lemrac 66

[JayCeon]

Asked myself so many times why have I got all this.

Yes, it's strange... But asking why can make it harder. Accepting and moving on from there can make it easier. But we can break the question "why" down to asking what our triggers are and preventing them, that's very useful.

nights can be very tough when you can't sleep

Agreed, and the days too, incl. the brain fog from it. An important part is to with the flow and not beat ourselves up if we can't sleep. There's a ton of things we can do to improve sleep. But sometimes it's just staying happy and deciding whether it's best to dose lying in bed with eyes shut or to dose half-sitting with eyes half-open and in both cases doing or thinking about something beautiful. And Yoga Nidra videos are when I can't quite decide to get up and do something, but I can't think up anything to get me tired.

Can you or anyone advise me please on this thing called brain fog.

There are 3 main strategies I think:

The first is switching or stopping any meds that might be causing it, like 1st generation H1-antihistamines.

The second is improving it using the 10-15 supps for it.

And the 3rd is coping with it by using the strategies that ADHD-people need to focus better: simplify our lives, using post-its, lists, alarms, tokens/rewards for things we've managed to concentrate on. Writing things down can help. It makes our self-discipline and then self-care more difficult, so it's good to focus on focusing better.

I getting very anxious with it.finding it frustrating Best way to cope

That's a separate thing which sometimes adds itself on to any suffering we have. But anxiety & frustration cause more of the same. Being conscious of that can go quite a way to help us just stop it. Also to accept it. We have a condition which includes brain fog, so it's logical and very understandable that we will get things confused, that things will take a while longer. If we think people may be surprised, we can quickly say "Ah, my brain fog again". We don't need to apologize to others or ourselves. It makes our invisible condition visible.

To get anxiety and frustration down, many relaxation and mental strategies can also help.