So isolated and alone living in shared accommodation with severe CFS/ME

[Cap413]

Thanks @erin here's one back. You're right I just need to get my own place sooner rather than later, I'm going to really focus on that this week. I'm so overwhelmed with all of the support I'm getting here, it really means a lot.

 

[Cap413]

@tinacarroll27 Thank you for sharing your experience of how you managed to find housing. I do have a really good priority with the council luckily but I didn't realise that Housing Association was something different! So I have spent months looking on the council website but not finding anything, not realising there was a different website I should be looking at for HA properties. One of my carers explained this to me last week, so I had a look but only 2 places at that time. I'm going to focus my attention more on here I think, as I think here is where I'm more likely to find one bed flats. It's really great though that you were given a flat after two months! And a really positive story for me to hear, I've only been on the housing register now a month so if I could find a place in the next month that would be fantastic. And I know, I lived on my own for 6 years prior to moving in here. It can be lonely, but at least you are in control of your loneliness, if that makes sense. Please feel free to PM me anytime, we can be lonely together

 

[Cap413]

@daisybell

 

[Cap413]

Hi @Kati thanks for that. It is difficult isn't it. Especially when you have had long years of friendships with people only for them to 'ghost' you once you become ill. You truly do find out who your friends are when you become unwell. I'm sorry you're also going through it, sending hope and health to you, and of course a big hug!

 

[Cap413]

@Cap413

I am truly sorry to hear about your situation. Doing that to you with the party is really mean. They probably chose to not think about how it would affect you because they wanted to go ahead with the party and did not want to have to accommodate you. A kind of banal cruelty but they probably also truly do not have an idea of how devastating this is.

Hi @Snowdrop this is what really hurt me, and I do feel that it was so very mean. I think the justification was probably that 'she wouldn't have come down anyway' so there's no need to even tell her. But just a quick text would have made all the difference and not made me feel so isolated, sometimes having the option to join in makes all the difference. I'm trying to think that way, that it's done now and there's nothing I can do. She went back to Spain this morning for two weeks so my house will be a little quiet for this period as my other housemate will also be going back to Italy over Easter so it'll give me some time to rest.

I'm not in touch with my parents unfortunately, my mother is very unstable mentally and I had to cut ties with her a number of years ago for my health sake. My father is not a very nice person - I reached out to him when I was in the hospital and he essentially turned his back on me - told me to get back in touch when I was better and less likely to 'depress him'. My brother experiences his own mental health issues, we have a really close relationship but his health issues only allow us to keep in touch occasionally. So it is just me really! I have my best friend who I see perhaps once a year and a couple of friends I met in hospital, but everyone has their own problems and I don't want to dump mine on any of them. I guess I've lost so many of my other friends I'm really reluctant to share too much in case they step back too.... so it's tricky.

Thank you for your kind supportive words, I'm sure things will improve for me soon. Sometimes we have to go down to come back up.

 

[tinacarroll27]

It can be lonely, but at least you are in control of your loneliness, if that makes sense. Please feel free to PM me anytime, we can be lonely together

It's great that we have Phoenix rising! It helps with the loneliness and we know we are talking to people who understand what we are going through. It's good you have applied to a housing association as well, they are usually informed by the council of your priority status but I let them know as well just in case. Lets hope you get somewhere soon!

 

[Snowdrop]

@Cap413

I'm very glad to hear that you at least are going to get a short break over the Easter holiday. I take this to mean that you are house sharing with students?

It would be good to know what area of the country you are in. It may help with any advice or tips for managing as help would be local.

Meanwhile, after a good rest, you could have a look at some of the ME advocacy orgs in the UK. You may already be aware of them but here they are:
Here are two worth looking at: http://www.investinme.org/landerP5.shtml
and http://www.meassociation.org.uk/

 

[Cap413]

Btw....your housemates aren't invited to this party!

Hahaha! Thank you, I like that. I guess if I think about it, this is kind of an exclusive club with a very specific criteria of entry. I do like the community feel on here, it is very open and kind. I think that's what I need right now.

Thank you for your message though. I am feeling very lonely, but less so since posting, I feel a lot warmer than yesterday, if that makes sense. I did manage to speak to a friend about it today who is also unwell, but not with CFS/ME, and she is very much in support of my housing application.

Yes I've found that people who have never experienced any kind of emotional pain or suffering are often the ones who struggle to discuss any kind of illness. I'm so glad I found this forum and had the courage to post. Here's a hug and wishes of good health for you too

 

[Cap413]

Hi @Basilico thanks for your message. In a previous reply to @hellytheelephant I did go into a bit of background about what has happened prior to the encounter I wrote about and my relationship with both girls. When I wrote that it was probably my fault and that I didn't communicate, that's because like you say, I always like to look at a situation from the perspective of the other person. I recognise that I'm not perfect and there was most probably something I could have done differently / better. But I can also take that a bit far and have a tendency to put other people's feelings before my own as I hate making anyone feel uncomfortable and know that talking about my illness can do that. So I put myself at a disadvantage (cancel carer appointments) to make other people feel comfortable. I need to stop doing that. I also diminish my own needs over others. Like with helping my housemate and exacerbating my health condition.

The difficulty is that communication is a two way thing. All of the points you make are spot on - they are probably staying away for all of those reasons you mention and others. And they probably do leave me alone in the kitchen because they think that's what I prefer, but also, it's just easier for them isn't it. When you've had a long day at work, the last thing you probably want to do is have a deep and meaningful with your chronically ill housemate and it's just easier for you to avoid it. I understand that. They probably don't know what to do, but there's nothing stopping them asking me that. And that's where communication comes in. I think that if I was important to them, they would ask. I really don't expect anyone to stop their lives for me... I hope what i've written hasn't come across that way! A quick text I don't feel is a big ask. I would do a lot more than that in their position, but I know they are not me, so I reduce it somewhat.

Thank you for your comments, it's always good to have someone to challenge my way of thinking

 

[boombachi]

http://forums.phoenixrising.me/index.php?threads/spoonie-film-club.47543/

Hahaha! Thank you, I like that. I guess if I thinkdifference bout it, this is kind of an exclusive club with a very specific criteria of entry. I do like the community feel on here, it is very open think that's what I need right now.

Thank you for your message though. I am feeling very lonely, but less so since postinl a lot warmer than yesterday, if that makes sense. I did manage to speak to a friend about it today who is also unwell, but not with CFS/ME, and she is very much in support of my housing application.

Yes I've found that people who have never experienced any kind of emotional pain or suffering are often the ones who struggle to discuss any kind of illness. I'm so glad I found this forum and had the courage to post. Here's a hug and wishes of good health for you too

Hi Cap, thanks for the hug. I finally found the emojiis so posting one back. Its amazing what a difference it makes to be communicating with people that understand. Im sorry to hear that your family can't support you for various reasons but glad you talked to your friend who understands what you are going through. You might want to look up "the spoonie film club" you will need to google as every time i try and paste the link it pastes it somewhere in the quote above. If you are up to it maybe you can even find it in there. Need to go as its my sons birthday today but will check back later to see how you're doing.

 

[Cap413]

Hi @Daffodil thanks so much for your message and kind words... Even though it was horrible, in a way I'm glad that it happened because if it hadn't, I would never have reached out in desperation and started this thread and then never would have gotten in touch with so many wonderful, kind people. I'm really touched by the level of response I've received on this thread, but I think that like you say, it's probably a topic that touches every sufferer of CFS/ME, the isolation and loneliness I think can be a big part of the illness and is something that we can all share.

I'm sorry that you were bedbound, it's dreadful isn't it, but so glad that you are better now. I've just messaged a homeopathist yesterday who does home visits, I'm thinking that may be helpful for me, but then I know that I'm not eating the best food right now... it's just what's easy and in reach, so I think I know what advice she'll give me.

Yes I would love a phone friend too! Someone who just gets it, that bit of extra support. I will PM you

My family I mention in the post to @Snowdrop.... they are not available and I have suffered with a lot of rejection from them. It's really difficult because with that and losing the majority of my friends when I became ill, I'm just really really reluctant now to talk with anyone about anything in my life that is troubling me, as I worry that I'm going to push that person away. I'm guessing that's probably a common feeling.... It's such a liberating feeling to be able to talk about how I feel so candidly on here and for everyone to be so accepting. I'm not used to it Sending you lots of hope for good health for the future.

 

[Invisible Woman]

I think most of us try to understand things from the "well" person's perspective in difficult situations. Trying to decide the best way to respond and react and it's a real shame that the "well" folk often seem not to bother worrying about our feelings!

Having read through what you wrote above @Cap413, I am not so sure that this is about you being unwell as about the fact that your housemates just seem to be selfish, thoughtless and plain rude. There is no excuse for the behaviour you described.

Mind you I have noticed that the people who will happily suck up all your time and energy always seem to be the people who are the quickest to quite openly dump you when it suits. I feel that folk like that will never have a true friends because they simply don't have the capacity for it.

I do hope that you get rehoused somewhere you like soon. Far better to live alone than with those two harpies.

 

[Cap413]

It's great that we have Phoenix rising! It helps with the loneliness and we know we are talking to people who understand what we are going through. It's good you have applied to a housing association as well, they are usually informed by the council of your priority status but I let them know as well just in case. Lets hope you get somewhere soon!

I know!! It's so so helpful. There's nothing more healing than speaking to someone who knows exactly what you are going through. I have just heard that I am possible top 10 for a few bungalows I have bid on so fingers crossed

 

[Cap413]

@Snowdrop, thank you.... no, they are from different countries, one is from Spain and one from Italy, and both have really strong family bonds, so they go back whenever they can. I don't have strong family bonds, so that's another really uncomfortable conversation as they don't understand why I stay here on my own over these special periods, like Easter and Christmas.

I am in the North of the UK. If you have any tips or pointers about anything in my area that would be very helpful - thank you.

And thank you for the links. They are really helpful. I will definitely take a proper look around both of them, I have scanned the ME Assoc one before. I think this is the time when I need to use a bit more energy trying to get things sorted, even though it might set me back, it'll probably pay off in the long run.

 

[Cap413]

@boombachi How lovely that you took the time to message and it's your sons birthday - I hope you have a really lovely day today and he has a great day. I'm sure he will with such a lovely caring mummy!

Thanks for the link to the spoonie club....What a fantastic idea! But what a shame, by the looks of it, it's now finished? I would love to start something like that up, give me a bit of focus and also make me not feel so lonely when I watch a film on the weekend.

Glad you found the hugs.... here's another

 

[Cap413]

Mind you I have noticed that the people who will happily suck up all your time and energy always seem to be the people who are the quickest to quite openly dump you when it suits. I feel that folk like that will never have a true friends because they simply don't have the capacity for it.

I do hope that you get rehoused somewhere you like soon. Far better to live alone than with those two harpies.

@Invisible Woman Wow isn't that the case!! God, you've put it so well just in a few sentences. A friend in need is a friend indeed, that's what this situation has made me think, and I don't like that because it's making me distrustful and cynical of other people and their motives. I hope I don't sound too negative by saying this, but it was very interesting for me to see how soon after I withdrew all of the support I was giving her, how quickly she took a step back from me and went to my other housemate. And quite sad

Harpies! that made me laugh hahaha. Thank you for writing me such a lovely supportive message. And for making me laugh! Sometimes I can't remember the last time I laughed properly

 

[tinacarroll27]

I have just heard that I am possible top 10 for a few bungalows I have bid on so fingers crossed

That would be great! Hope you get one soon!!!

 

[Basilico]

But I can also take that a bit far and have a tendency to put other people's feelings before my own as I hate making anyone feel uncomfortable and know that talking about my illness can do that. So I put myself at a disadvantage (cancel carer appointments) to make other people feel comfortable. I need to stop doing that. I also diminish my own needs over others. Like with helping my housemate and exacerbating my health condition.

This is something I do as well. I'm an overly empathetic person and I'm constantly trying to train myself to be less so, but it's difficult to do when it's a part of your character.

You mentioned that you felt your Spanish roommate used you up and now that you need something in return, she's moved on. I've also had this issue a lot in my life, and it's made me realize that there are a lot of people who are happy to take but they don't give back. So many friends I was there for when they were going through break-ups or particularly stressful situations, but once they were in a better place, it was like I didn't exist anymore. I don't really know what the solution is, because I genuinely like helping people, but I'm tired of being taken advantage. At this point, I don't have any close friends within physical proximity because every time I meet someone new, this same thing tends to repeat. I've done a lot of soul searching to try to understand if it's me causing these results, but for the life of me can't figure out what to do differently to get different results.

It might be that this roommate will ultimately drift apart from her new 'friends' rather than give back to them just like with you, if this is the person she is.

The one bright spot is that there are so many really wonderful people here on PR, and maybe we can fill the void left by your housemates in some way.

 

[Snowdrop]

@Cap413

Just as an aside that has nothing to do with anything-- you mention being in the North UK.
I was trying to imagine where the north starts-- that got me thinking where would someone define the North of Canada.

I guess that would be The Territories and Yukon. But then most consider North by province. So northern Ontario would be most of the province actually.

I guess the point of that is when you've been sick like this for a while little things amuse.

But some of us put the general area of our residence in the signature, it helps if anyone who sees you in a post might have useful info regarding your area. Or you can just connect in other ways that are area specific. I don't know of any resources specific to you although I do know that Julia Newton would does ME research is at Newcastle.

I guess it depends on how much time one expects to spend here.

Anyway, I have been to what I believe could be termed the North in England--my daughter's undergrad degree is from Durham Uni and the last trip I ever made before declining further was to go with her to get settled in at the start.

It is very disorienting at first when coming to grips with being this ill. Be kind to yourself and know that it will take time to redefine relationships and mourn losses. Some people may come round slowly. There is now a lot of material available to accurately describe this illness and it's impact on our lives to share with others selectively and with a thought as to what would be most suited to what they would respond to.

The losses and casual hurts are always hard. Many of us use distraction, reaching out here and other strategies to cope.

 

[boombachi]

@boombachi[/USER

Thanks for the link to the spoonie club....What a fantastic idea! But what a shame, by the looks of it, it's now finished? I would love to start something like that up, give me a bit of focus and also make me not feel so lonely when I watch a film on the weekend.

Glad you found the hugs.... here's another :hug:

Soz, am a bit out of date, but yes would be a good idea to start another.