Ill and living alone

[Becca19962014]

I'm unwell at the moment and all I keep hearing from everyone is I need bed rest and to stay there for a week to get better. I live alone. And by alone I mean alone. Every person who "offered" to help when asked decided not to. I live somewhere very small so cannot store much food. I've been ill like this for over a month now (tonsillitis which isn't getting better).

So without going off the deep end and shrieking like a crazy woman at people about how alone means alone and I've no fucking choice but to go out and be ill how do I get people to understand I cannot just stay in bed? It's not like I can sleep anyway as my throat is closing up -combination of tonsils and Ehlers Danlos. So I'm reading or watching DVDs and getting the odd hour or two of sleep during the day and night.

People includes GPs, pharmacists and nurses as well as others I've seen when out getting food/meds.

The only family I have is abusive and people are now suggesting I go back to them "just until I get better", they weren't prosecuted so apparently it couldn't have been that bad. If I go back I won't get away again.

I can't be the only person in this position, so how do others manage?

ohdear I've no money or mental or physical ability to move, literally I've not been more than two miles from where I am in years. I move its back to family, no one else is going to help me for free and I've no money.

I've got a cupboard and they've got cereal, tea and pasta in and a small fridge with a pint of milk, sugar free fruit juice, cheese and yogurts in. I've got to be careful what I eat because of the diabetes (so no rice pudding, which I loved!) and I've got to be careful with how many cereals I have (ive been having a lot of porridge but have been told that's why my blood sugar control has been poor - not because of adding crap just because of how it effects me, same with other cereals like weetabix).

I'll have a think about what I can fit and how long I can make last. I've just been getting what I can really.

That's a shame, but yeah I can see why those things wouldn't be good with diabetes.

What about things like eggs - they don't need to go in the fridge, they keep for ages outside it. You could probably get enough dried beans and chickpeas to keep you going, and tomato puree doesn't take up much room. Again, boring, but light enough to get home from the shops when you're ill, and doesn't take up much room.

Not eggs. I cannot stand eggs!! Others are good suggestions though!

They're not to do with substitute prescribing.

Your life sounds really hard just now, and lonely. I'm sorry.
Do you think if you can just manage to get through the next few days things might pick up? It sounds like you really don't want to involve your family too much again.
The daily trips to the pharmacy sound really hard. If they see you every day they must know you're struggling right now. It seems really harsh that they haven't tried to help you. Although I know everyone, every service is strapped. Have you been honest about how ill you are feeling or are you putting on a brave face and they haven't realised?

To be honest the pharmacy have tried to help. I heard them ranting have a word with the out of hours gp when I went today, who apparently told them to tell me to rest and I'll be fine. They were not impressed.

It's true I hide how hard things are - that's not a consious thing. I was abused as a child for showing feelings and vulnerability such as illness was taken advantage of. As an adult I fought to be independent and made the mistake of letting myself be referred to mental health services where I thought I could be honest about feelings/mh issues/childhood. Instead I got labelled borderline, informed I was manipulative, pathological liar about being disabled (yes I gave proof I was told I must have conned them), attention seeking and discharged - the only difference was they didn't physically assault me, manipulating me with tales of help if you need it and then refusing really hurt. The relevance? Now I bury things even more and though I've told people (GP/social worker/others) this because I'm "just borderline" I'm ignored.

I also live alone and have no family nearby. When i am sick i am sick and that's prette much it. I've had to relly on strangers for help before and i agree it's not easy but it might be important that you try it if your situation/health is deteriorating. I second the sugestion to try to arrange for the pharmacist or someone from the pharmacy delivers your meds. You can pay them for this. As for food, if you have little storage space you can buy food and keep it in the bags as long as it doesn't need to be refrigerated. Not ideal but it can be a temporary solution.

Mh advice is that you don't hide how unwell you are. Ah it is a fact: most people havs no idea/don't believe/can't grasp that when you're alone you are ALONE. It's annoying.

So I had to phone out of hours GP as I was choking and had high blood pressure. They don't think i have tonsillitis but it's my EDS deterioating causing my throat structure to collapse and though it's not badly swollen my huge tongue (EDS related) means not enough air is getting into my body.

I am terrified.

Apparently I should look on the bright side - most the time I'm not choking

EDS-Ehlers Danlos syndrome

As i understand sometimes patients with EDS can undergone certain procedures to help with this. Has you gp mentionde this?

*mentioned

God no advice, sorry but you have my sympathy. I don't think people understand just how shit the health system is for people who can just about 'cope' but struggle to do the basic things most people take for granted. It really sucks balls and I'm sorry you have to deal with other's ignorance on top of being ill. Even health professionals can be absolute idiots sometimes which is something else people forget. I'm glad the pharmacy are on your side. That's positive.

Sorry I can't give any practical advice. You sound like you're doing your very best and you should be proud of that. Being ill is hard and getting yourself out of difficult circumstances takes huge strength. You're stronger than they think.

Inthetropics wondering what type of procedures EDS sufferers can undergo. Other than surgery to fix an unstable joint (which is not generally advisable), I’m not aware of any general procedures. Certain complications such as severe gut dysmobility might result in someone needing to be tube fed or use a stoma but these are at the far end of the spectrum of severity.

@TheOud I know very little about EDS but i have a coworker who has it and has had surgery and many other procedures, including one to facilitate breathing. Not sure what they were.

This suggestion won’t help now but is there any opportunity to move? Are you in your own home, HA or privately rented accommodation. If you’re in a HA place you can apply for a transfer to somewhere more appropriate for your needs. Being alone somewhere remote can be hard when you’re in good health but sounds bloody scary when you live alone and have long term conditions. I have EDS and live alone but In a large suburb with plenty of people around . Is there any way at all you can start to work towards a move? Hope you feel better soon. It sounds really difficult and scary at the moment .

No they didn't mention anything. Other than that was an option for what was happening. They're 99% it's causing obstructive sleep apnea as well as day issues, but I can't get to the sleep clinic, serious travel issues.

Operations in the past haven't worked as in they've not healed properly.

inthetropics. I think that certain complications and symptoms can be treated surgically (usually cardiac and gut related as these can be severe) but usually it’s a combo
Of pain management, physio to strengthen muscles around the wobbly joints, orthotics and learning good posture, joint care and how to pace yourself.

theoud private rent. I've no means to live elsewhere, either physically or financially. If I move its back to abusive family. I'll never get private rent again as can't afford it and won't get reference from here due to damage from mh stuff.

Physio made mine worse due to the defective gene, have orthotics, need stocks now though idiots keep telnet me I don't (they've no idea of my needs) pacing hard

I live alone and went through cancer treatment alone. That was hard.

Hospital staff: "What, you've got no-one?? No-one at ALL??"

I've been trying to set up some kind of support system for people going through chemo alone - but apparently there are all sorts of problems with it.

You have my sympathy

Op I'm also agoraphobic and I understand. Partly it's so you don't give in to it, also partly because what people don't get is that there are levels of agoraphobia. It's not always just never going out its only going to "safe" places even when you do manage to get out.

All you can do is rest as much as possible when you are home, plenty of fluids, good nutrition (ensure can help, also soups, fruit juice) and hopefully feel better soon (I also went through a year I got tonsillitis several times, felt like every few bloody weeks!)

"Tomorrow is a hard anniversary for me so that might also be contributing to me feeling snappy!"

Totally understandable. I'm not a cryer but when I'm ill if something else then hits I'm off!

"Im not eligible, they won't deliver meds on weekends and I must speak to pharmacist" do you have a local medical advocacy service? Most people do but they aren't really advertised. Weirdly ss will know.

"Why do you have to pick up meds every day? What sort of meds are they?" Think I can guess but op has said they don't want to go into that which is absolutely their right.

" I truly sympathise with your plight, but when you're feeling a little better, you might want to think about your living circumstances going forward. Is living totally alone and unsupported, in the middle of nowhere, with the general health conditions you have, really the best idea?" Do you REALLY think people CHOOSE this?!

I'm wondering if district nurse service could help or signpost/arrange help?

I'm just me and dd. Dd does what she can but she works and has a disability herself. And I'm very conscious I don't want her trapped here with me forever!

I'm currently housebound, also rural but not as much as op by sounds of it, as I'm still ok for online shopping and pharmacy deliveries. But just a few more miles west and I'd be stuffed!! My family (also abusive) are also local. But even aside from the toxic shit they're struggling themselves with ill health!

I'm already thinking when dd moves out I'll need to think about moving to nearest city in order to get the support I need to survive.

But the thought makes me extremely anxious as that means unfamiliar area again.

springy that would be so incredibly useful for people with any kind of long term illness as well as cancer which must have been dreadful for you.

I was constantly told I must have someone 'really'. When I complained it was ignored. Last time I was in and hounded by family to go back to them the staff told me I'd be much better off with them and was being very silly and how sick they were if people lying about being alone. That only stopped after I told a member of staff that not every family is a safe, regardless of how lovely they sound over the phone and unless the trust now advocates people being abused, in which case I'd like to speak to the safeguarding officer, I didn't want to hear anymore from anyone about how I would be "better off giving them another chance" likewise DV situation.

I later found out they automatically assume people are lying when they say they've no one to help either to stay in hospital or get care.

graphista I'm sorry you understand, but yes you've hit the nail on the head with all you've said. I'll try pop back later. Have to try get meds now.

Like you Becca I'm alone because of my abusive family.

No way in a million years would I subject myself to them at the worst point in my life when I was at my most vulnerable!!!