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Hi, new member here, scared about how to keep myself alive?

jelly38

Hello.

A couple of years ago I developed a weird immune system illness that leaves me housebound for 7 or 8 months of the year. Basically I am allergic to all kinds of things from cold weather to exercise and my whole face swells up, to the point I can't see, hear, speak or breathe properly, and the skin on my face turns to a lava like substance that moves. I live alone and my life has become unbearably hard.

Everything from food shopping to getting my electricity meter topped up is so difficult for me. I had a boyfriend who lived in another country and was helping me out with online food shopping when I couldn't see. He left me about a month ago. My computer is on it's last legs and once it goes I won't be able to order food online anymore. At the moment, now that the weather has warmed up I am able to go out again but I am very scared for what will happen in the autumn when the illness comes back strong again (I have milder symptoms when it is warmer).

The doctor contacted social services because they were concerned about my safety and wellbeing. But social services said there is nothing they can do for me because I don't have any money. They said if I need some kind of carer I would have to pay for it. I applied for pip but haven't been given a date for the assessment yet.

If I don't get PIP money in time for autumn I don't know what I will do. I can't afford food deliveries, can't get a new computer, can't get my own electricity, can't even take my own rubbish out a lot of the time, often can't feed myself, and I have no support network. If I needed to call an ambulance I wouldn't even be able to do it if I couldn't see. The room I live in is about 8 foot wide and it is like being in a prison cell for 8 months of the year, except unlike prisoners I can't go walk in the yard. The isolation has been unbearable.

This experience has been such an eye opener for me about how hard it is for severely disabled people. I really thought there would be some kind of support system for people but apparently not, and they will just let a person die alone in a room if they can't feed themself?? My heart goes out to everyone facing struggles like this. Disabled people must be the strongest people out there.

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Sandy_123

Hi @jelly38 welcome to the forum
I'm so sorry to read about the difficultly you are in.
Have you spoken to your gp or specialist about how you can manage your condition? Or further investigations.
Sounds frightening being on your own with no help.

jelly38

Thanks for your kind words, Sandy. I didn't respond to the high levels of antihistamines they prescribed and it appears it is something I am supposed to learn to live with. I have been reading about it for a couple of years and it seems to be one of those things they haven't found a cure for. Some people say it goes away after about 5-7 years, some get stuck with it for life. But all the people I have read about with it have a partner who helps out, and I don't know how people without a partner manage to do basic living stuff.

Sandy_123

That's a shame you didn't respond to the meds I've put a link below

https://www.gov.uk/apply-needs-assessment-social-services

I don't know why the social worker said you need funds as there is funding available. Use that link to apply.

jelly38

Thanks Sandy, yes I had the needs assessment. It was very bizarre. She was watching the telly at the time. She shouted at me, "You want someone to come to your house and dress you and feed you?? You pay money for that! Even when you don't need it, you pay! You pay every week! Do you have money?? No, you don't have money! So you can't have this!" I was pretty shocked. I told her the doctor said there was something called rolling care which meant people could help you in the weeks you were having difficulty. She shouted "No I do not know of this!" I asked what I should do if I couldnt get my electricity - she said "Phone your supplier".

I never heard from her again after the assessment so I really didn't understand what the assessment was for. She said she wouldn't contact me again. I came away feeling totally hopeless.

jelly38

Also, I told her I couldn't make food for myself often because I was too ill and she said "Get takeaways then". I said I couldn't because of how many things I was allergic too so she said "Get special takeaways." I said I couldnt afford takeaways so she said to break the takeaways into chunks and eat them as separate meals.

Sandy_123

Gosh that would of warranted a complaint when was this? I would fill form in again and try, it will be someone different hopefully

jelly38

Oh, this isn't what they're all like then? Ok. It was my first experience with social services and I wondered if this is just what they were like. This was about a month ago. I can't even complain because she didn't give me her name. She said "I can do what I like because it's after 5 and everyone has gone home"

Maybe I'll try again, thanks.

Sandy_123

You can complain they will know who visited you
If you look on your local council website should be a form on there for complaints.
I think it's horrible the way you were treated.
Have you looked in your area locally for people who provide a friend service, I know in mine there is one, not saying everyone has one.

Steve_in_The_City

@Jelly38 Google MCS (Multiple Chemical Sensitivity Syndrome) and IEI (Idiopathic Environmental Intolerance). This is a condition to where you are sensitive to many triggers: The smell of food, anything perfumed including ordinary everyday cleaning chemicals and synthetic clothing. The condition is not formally recognised in this country and people cannot understand it. You will feel worse in the Autumn if you are living in a rural or urban area where wood and coal is used for heating because people with MCS are susceptible to anything that emits smoke or contains petro-chemicals including formaldehyde (that is in practically everything). People with MCS feel ill when they have new furniture or have to deal with new paintwork or the smell of clothes washed in scented detergents and fabric conditioner. Basically it is like being allergic to everything.

jelly38

Thanks for your replies everybody - I can't tell you how good it feels to have some support after feeling so alone. I'm not the kind of person who ever asks for help, and it was hard for me to write that post, so I'm so grateful to have nice people reach out. I don't know how to do the @ things and tag people, so I'll just respond with your names.

Sandy, I've been referred to some kind of befriending service and am on the waiting list. I have no idea what it entails. Slightly nervous about some random stranger coming in my home, not knowing who they are, if this is what happens(?!) It sounds like it could be potentially awkward but I'm willing to give anything a go.

Steve, thanks for all that info. After doing my own research for the past couple of years, it appears I have something called Mast Cell Activation Syndrome (MCAS). Whilst I do have reactions to certain external things, such as dust or bleach or perfume, I don't just have allergies to external things. Emotions such as anger or fear or over-excitement can set it off. Exercise can set it off. My body tensing when in a car that suddenly breaks can set it off. It appears to be related to childhood trauma and being left in dangerous situations - in my case, anyway - where the defense mechanisms in the body go full-on nuts to try protect me and see everything as a threat. I've had an overactive immune system for about 30 years because of this, but it's only the past couple of years where it's totally disabled me.

Stormy, it's so good to hear from someone in a similar spot, though obviously I feel terrible for anyone else trapped indoors. Yeah, I pretty much became terrified of the world and panicky around what would set it off. Like you with the eczema, mine comes with psoriasis, which is a whole other bag of fun, ugh. I'm glad to hear yours hasn't been triggered so far this year. Man, these strange illness are so baffling. I'd like to hear more about your experience if you don't mind, and read your blog if I could. I can't figure out how to PM on this site. Can you let me know how or message me? And yes to the gatekeeping thing, I thought that too. It felt like she had been trained to offer "solutions" to problems so she could tick a box and say I didn't need help.

Purrrr, I really appreciate your kind words and sharing that info. I have no experience whatsoever with social services and have no idea what services they provide or don't. It really helps for me to hear other people's experiences. Yeah, I'm feeling the best way to deal with social services is via my GP because they seem less likely to fobb off someone "official". Like you I have problems cleaning my place (cleaning products allergies, can't change my hoover bag because of the dust etc) and have no idea what I am supposed to do. Yikes, is that how much a cleaner costs? Ok I'm going to try looking for info on that social funding thing you mentioned. Sorry to hear how frustrating trying to get help has been for you. If I ever get the PIP situation sorted then I'll move on to my housing situation which is a whole other nightmare - I can't get on to the housing register and they have no contact details to actually talk to a person. I'm reassured by the fact you managed to get some house mods. But, oh boy, this system is a nightmare!

ladyluck

jelly38- this is exactly what this forum is about. And also people talking and making friends. No one should feel isolated because of their disability. And changes happen so quickly in health matters. Whoever coined the phrase “life turns on a dime” really knew what they were saying. After all the worry and fretting, form filling and anxiety, this forum has probably saved a few people from complete devastation.

Hannah_Alumni

Hello @jelly38

Welcome the the community

I am so sorry that you went through an assessment with someone so awful. I am going to send you an email from community@scope.org.uk today. Keep an eye out for it

jelly38

The life turning on a dime thing is just so true Ladyluck. It doesn't matter how much you prepare in life - you never have any idea what's coming. Doctors should tell people about this forum - I completely stumbled across it by accident whilst hunting for PIP timelines and, like you say, it's a lifesaver.

Thanks for the email, Hannah, much appreciated, I will reply later.

Purrrrr, thankyou for the really useful info. I have to admit I don't entirely understand the difference between social services and adult services and have no idea which of these assessed me. She didn't come to me, she phoned me. I thought I might get some kind of letter saying what the outcome of my assessment was but....tumbleweeds. I'm thinking it might be better for me to reapply in the autumn when my health is worse and I might be more likely to get some help.

I'm encouraged by your friend stories. Part of me feels embarrassed at the idea of using a befriending service but you made me feel better about it. I have to admit I'm worried about things like them being about 20 years old - not that I've anything against younger people - I'd just be less likely to open up about certain difficulties to someone without much life experience.

ladyluck

So so true @purrrrr

chiarieds

Hi @jelly38 - I've been meaning to get in touch. As soon as you described what you're going through, I thought Mast Cell Activation Disorder, which is something I think I also have, tho nowhere near as bad as you.

I've learnt about it in the past few years as it can be associated with the genetic disorder I have, which is Ehlers-Danlos Syndrome (EDS), a connective tissue disorder. I've learnt about it mainly due to Dr Anne Maitland, who gives lectures about this in both the EDS & Chiari 1 Malformation (which also runs in my family) communities. If you haven't come across her, you may be interested to see her videos on youtube. Here's one I've just re-watched, & is a good place to start. In some of her lectures she has the tendency to talk very quickly, but this one's fine:

https://www.youtube.com/watch?v=LddITjni4G0

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