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

[Cap413]

Hello everyone. I'm living in a shared house and I have severe CFS/ME so am bedbound for most of the day. I'm having such a difficult time right now, and I feel so stuck and lost in life. When I first moved into this house, my CFS was moderate and more manageable and my housemates didn't know anything about it. Like most people who suffer with this illness, it has taken a while to come to terms with it, and I didn't like to admit to anyone that I wasn't well or struggled with certain things, but more that I didn't really know how to word it, or explain it.

My health has deteriorated over the last 6 months and I have become increasingly bedbound, so saw my housemates less and less until now I barely see them on weekdays as I am resting in the evenings. I only see them on the weekends now, and then sometimes not at all, as they know the times that I use the kitchen so stay out of it during that time. I've felt more and more isolated during this time, but last night my housemate had a birthday party downstairs and nobody told me or invited me. I felt so upset and I hardly slept. Not just because they were loud but because living here is making me feel so isolated and alone. I would never ever have done that to anyone if they were in the same position as me. It's so sad. I guess that they probably didn't want an ill person spoiling the mood for everyone.... I have carers coming in every morning to help me and I cancelled them coming on the weekend because I didn't want my housemates to feel uncomfortable. I'm such an idiot. We used to be really good friends and I did a lot for my housemate before I became ill, so it's really upsetting that she isn't bothered at all about how I'm doing. I feel sick today wondering what I'm going to say to them if I see them.

I am trying to find alternative accommodation but it's really difficult. I've spent the last three months and lots of energy applying for social housing but lately I'm wondering to what end, the houses available are in really bad areas and it's probably going to take me years to get one that is suitable and adapted for my needs.

I just feel that my days are sat here waiting for something and I don't know what. I just feel so alone at the moment and that I don't have control over any aspects of my life. I'm not sure if anyone feels the same?

 

[Pendergast]

I just feel that my days are sat here waiting for something and I don't know what. I just feel so alone at the moment and that I don't have control over any aspects of my life. I'm not sure if anyone feels the same?

Hello @Cap413, so sad to hear that . I feel something similar....

18 years through the ME/CFS nightmare and I can´t work, nor study or have some social life (when I was better and prior to diagnosis I tried it but things only got worse over time). I lost friends, girlfriends, job opportunities and was criticized by my own family. I´m 34 years old and it´s getting very difficult to handle this.

Also, I have no financial help. I lost a judgement and only have my family´s support (which I appreciate but makes me feel very sad and chained).

I think what we are waiting for is only hope. Some breakthrough or treatment that we can try and really get better. Some recognition or empathy from this insensible society, which doesn´t know what we are struggling. Some justice after so long time.

And I think we´ll see it and if not, I´m sure the next generation of patients will not have to go through the same as us. That makes me happy too . Every step Ron Davis, Fluge & Mella, Lipkin...take, goes towards that justice!

A big hug!

 

[trishrhymes]

Hi @Cap413 . This sounds like a really lonely situation for you. I'm really sorry to hear what a difficult time you are having.

Have you been able to explain your illness and needs to your housemates at all? They may have misconceptions about what is wrong, and think you are choosing to be reclusive. They may also be scared of doing or saying the wrong thing, so avoiding you through embarrassment.

I wonder whether you could find a way to tell them about ME and how you are feeling. Maybe a short note saying you are lonely and ill, and giving some description about ME, perhaps a leaflet from the ME association.

It may also help if you spell out to them what you would find helpful, like one of them dropping in to your room once a day for a 5 minute chat and to check you're OK. They may be afraid of getting sucked in to being your carers, which may be more than they feel able to cope with. You could explain that you are just asking for a bit of social contact to reduce your isolation.

If you can re-establish some friendly social contact, you could also say if they are going to have parties, could they warn you, and maybe invite you so you don't feel left out, on the understanding that you will only be able to attend for a few minutes on a good day because of your illness, not because you are unfriendly.

I do hope you can resolve this.

 

[Cap413]

@Pendergast thank you for your kind words. I'm sorry that you're going through something similar. I'm 31, and I have also lost friends and boyfriends and am pretty much on my own right now. I don't have family either. It's tough isn't it.

I'm lucky in a way that I get some benefit from the DWP but im waiting for them to come out and do my home assessment, so there's that worry every time I open the post, dreading the confirmation letter. I'm really sorry that you have to rely on family for financial support, I can imagine the invisible strings that it feels are attached to that. It's terrible that this condition is so misunderstood that sufferers are unable to get adequate financial support.

Yes it is hope, that's all I have now. I'm just clinging to it with everything that I have, really hoping that someday soon we get some good news.

Thank you for the hug, I need it. Here's a long one back

 

[Cap413]

@trishrhymes thank you for your kind words too.... the thing is I know it's a difficult situation. On both sides. When I relapsed badly in January I did try and talk to both my housemates about how I was feeling, but whilst one of them is more open to talking about things like this, the other who I've known longer is quite awkward, and when I tried to talk to her about it, she will end the conversation quite quickly. I cried in front of her once about it and she was so clearly uncomfortable I felt terrible and it's been awkward between us ever since. I wanted to send them both something about ME but I got the feeling neither of them would have taken the time to read it, as I'm not very important to them.

I think that you're right that there is probably a large amount of misunderstanding there about my illness, and perhaps the expectation from them that if they sit and talk to me about it, yes, they will end up having to care for me. It is all down to poor communication I know. It doesn't help that I was so severely depressed when I relapsed that I spent my days and nights crying myself to sleep, so I did avoid them for a while as I couldn't bear to see / speak to anyone, so deep down I know that this is all really down to me and my poor communication. Now it just feels like too much time has passed. But also that they're not particularly bothered. They both have full lives and busy jobs, so I don't really factor much into their equations.

It's just really nice to be able to talk about it. Thank you all for your support

 

[Ritto]

@trishrhymes thank you for your kind words too.... the thing is I know it's a difficult situation. On both sides. When I relapsed badly in January I did try and talk to both my housemates about how I was feeling, but whilst one of them is more open to talking about things like this, the other who I've known longer is quite awkward, and when I tried to talk to her about it, she will end the conversation quite quickly. I cried in front of her once about it and she was so clearly uncomfortable I felt terrible and it's been awkward between us ever since. I wanted to send them both something about ME but I got the feeling neither of them would have taken the time to read it, as I'm not very important to them.

I think that you're right that there is probably a large amount of misunderstanding there about my illness, and perhaps the expectation from them that if they sit and talk to me about it, yes, they will end up having to care for me. It is all down to poor communication I know. It doesn't help that I was so severely depressed when I relapsed that I spent my days and nights crying myself to sleep, so I did avoid them for a while as I couldn't bear to see / speak to anyone, so deep down I know that this is all really down to me and my poor communication. Now it just feels like too much time has passed. But also that they're not particularly bothered. They both have full lives and busy jobs, so I don't really factor much into their equations.

It's just really nice to be able to talk about it. Thank you all for your support

 

[Ritto]

Posted above before I added a hug

 

[Cap413]

Posted above before I added a hug

Thanks, here's one back

 

[hellytheelephant]

@Cap413 you are probably up to your limit with hugs but here is another:

It sounds as if your housemates are feeling out of their depth- I don't know if they were friends before you moved in together, or you have got to know them since you have lived there....but a lot of people at your age have not ever experienced an illness as devastating as ME, and just don't know what to say or do to help.

Could you tell the friend or text her that it would be a help if she could come and have a coffee and a chat with you in your room.? I have found that if you are very specific with something that a person could help with then they often come through. You could tell her it felt weird to you that there was a party and you weren't a part of it..and see what she says. Make it clear that you don't need to be cared for but that you miss seeing her and catching up...
You could also say: ' I guess it must be weird for you that I'm sick all the time...' , give her some space to ask you what she wants to know about ME. She may not respond but I hope she does.

Don't prejudge a social housing situation- we live on a social housing estate and have found our neighbours to be kind and supportive- many of them are also disabled and probably understand our situation ( we are both chronically ill) so much better than people who are fit and well and have busy social lives.

Hang in there- you are not alone!

 

[Hugo]

A hug from me to.

I just saw elephant post and that seems like a sound advice

A tough situation for you, since you have your illness to deal with you also had and maybe still have depression and housemates that may be far from ideal for you.

I had a situation before that was maybe not exactly the same but also very stressfull and sad. My ex left me and I trusted her so it came as a suprise. I was forced to live with my ex for many months until I could find a place of my own. That time was terrible. She didnt want me there even though she didnt say it and I didnt have any means to get a new flat. I got help from my father to take a loan on a flat but that was hardly easy and it was a really unpleasant feeling asking for help for someone thats not very empathic most of the time. Also like you I got more ill, not because of the stressors but my ex got an extreme cold that I ofcourse got and my ME also became much worse like yourse.

I got better and worse again when I got lyme. But life atleast got a hell of a lot better than that situation. So things can change and life can take many directions. I hope your living situation with your housemates will be better but if not maybe theres some other solution to the situation. Whatever you do dont bring yourself down, you done nothing wrong in this. Youre just sick and got sad because of that, a very natural reaction to a terrible event.

 

[erin]

Sorry that you're feeling lonely and left out.
Maybe you could reveal how you feel to your flat mates without being so drastic. Don't just be invisible you live there too.
But I feel communal living is problematic with ME. I agree with Helly, you might benefit from having your own place.
More hugs....

 

[tinacarroll27]

I was in a similar situation to you living in a shared house and my housemates didn't understand ME and it caused a lot of friction and stress. I asked the council to assess my housing needs and they gave me priority status for re housing. I also applied to a housing association and told them I had priority status. I got a one bedroom flat on the ground floor, within 2 months of applying, only 5 mins from where I lived.
Living alone can be lonely but I have found it better for my health. It might be that where you are living is not suitable for your needs and you should tell the council. Hope it turns out ok for you,

 

[daisybell]

 

[Kati]

Hi @Cap413 know you are not alone. I am in a similar situation currently with people dropping out from my life. It's devastating and really tough. Be extra kind to yourself in these difficult time.

Sending you hugs and hope.

 

[Snowdrop]

@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.

Just keep your focus away from the treatment you experienced while they partied. For now it's over. You need your energy to focus on helping yourself.

it's a difficult situation to be in. You didn't mention family members--perhaps they are not able to help?
If you could just find one person to focus your efforts on educating them and getting them to help--whoever might be most receptive.

And sometimes, for no apparent reason things change something happens we don't expect and some good fortune comes our way. Sometimes. Hope things improve for you .

Welcome to PR.

 

[boombachi]

Hello everyone. I'm living in a shared house and I have severe CFS/ME so am bedbound for most of the day. I'm having such a difficult time right now, and I feel so stuck and lost in life. When I first moved into this house, my CFS was moderate and my housemates didn't know anything about it. Like most people who suffer with this illness, it has taken a while to come to terms with it, and I didn't like to admit to anyone that I wasn't well or struggled with certain things, but more that I didn't really know how to word it, or explain it.

My health has deteriorated over the last 6 months and I have become increasingly bedbound, so saw my housemates less and less until now I barely see them on weekdays as I am resting in the evenings. I only see them on the weekends now, and then sometimes not at all, as they know the times that I use the kitchen so stay out of it during that time. I've felt more and more isolated during this time, but last night my housemate had a birthday party downstairs and nobody told me or invited me. I felt so upset and I hardly slept. Not just because they were loud but because living here is making me feel so isolated and alone. I would never ever have done that to anyone if they were in the same position as me. It's so sad. I guess that they probably didn't want an ill person spoiling the mood for everyone.... I have carers coming in every morning to help me and I cancelled them coming on the weekend because I didn't want my housemates to feel uncomfortable. I'm such an idiot. We used to be really good friends and I did a lot for my housemate before I became ill, so it's really upsetting that she isn't bothered at all about how I'm doing. I feel sick today wondering what I'm going to say to them if I see them.

I am trying to find alternative accommodation but it's really difficult. I've spent the last three months and lots of energy applying for social housing but lately I'm wondering to what end, the houses available are in really bad areas and it's probably going to take me years to get one that is suitable and adapted for my needs.

I just feel that my days are sat here waiting for something and I don't know what. I just feel so alone at the moment and that I don't have control over any aspects of my life. I'm not sure if anyone feels the same?

Hi Cap143, I am so sorry to hear how you are feeling. You sound very lonely and isolated at the moment. Do you have a good friend or family member who can support you emotionally Even if just on the phone.

I can't add anything to the fantastic advice above. The sad reality is that most people feel uncomfortable with other people's suffering or distress. No such problem on Phoenix rising! I hope you feel from the replies to you post that you are not alone.

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

 

[Basilico]

Hi @Cap413 . I'm so sorry that you are having such a rough time, and it's good that you are able to come here and vent a bit, definitely better than keeping it bottled up!

I think that your frustration is very understandable. When I'm really upset at someone, before I condemn them in my mind, I try to think about the situation from their perspective and try to understand if I'm being fair to them or not. Since no one else is in our minds, we can't assume that what's obvious to us is obvious to others. So using what you've explained about the situation, I'm going to try to put myself in your housemates' position for a minute. I don't want you to take this as a criticism at all.

From your posts, if I understand correctly, you've not really been able to communicate what's going on with you and what you need/want from your housemates. So what they're seeing is that one of their housemates suddenly stopped socializing/interacting with them, spends all day in bed. Something is wrong, but it's unclear exactly what. The situation is not good.

Many people with even recognized chronic illness (like cancer) often end up losing friends because people don't know how to deal with people who are sick. Being around a really sick (or sad) person can be really depressing, and maybe your housemates are instinctively staying away because they don't know what to say to help and are worried that they'll end up feeling really bad themselves. I'm not making excuses for them, I'm just trying to understand from their perspective.

Maybe they interpreted you staying in bed to mean that you don't want to interact with them, or that you would prefer not to. Maybe they think that by giving you space in the kitchen, they are giving you what you want. And perhaps they didn't invite you to the party not because they were trying to be mean, but because they assumed it was obvious that you wouldn't want to participate (even if that was incorrect).

You've said that they don't care at all about you because they are busy with their own lives. But you can't expect that because you're sick that they will stop their lives. I don't think you should assume that because they are busy they don't care about you.

Maybe they really care a lot but they don't understand what you need and they are making wrong assumptions, and they assume that you want them to stay away. Or maybe they really don't care - I don't know what kind of people they are, and what your bond with them was like before getting sick. But if they are the kind of people who turn out to truly not care about you now, then they likely wouldn't have ended up being very good friends to you even if you hadn't gotten sick.

I think that before deciding that they don't care it's worth trying to tell them what would make you feel better, and letting them know that you won't ask them to take care of you (as @trishrhymes mentioned). If you tell them exactly what you need/want and then they still don't do it, then it's clear where you stand and you don't need to waste your time on thinking about them.

You mentioned trying to talk to one housemate who was uncomfortable. Not everybody is good at dealing with emotional issues, and she may be one of these people. Since it seems that you felt you gave a good try with her and it didn't work too well, maybe focus on the others who seem to respond a bit better.

I know it's awful to be sick like this, and I hope that you are able to still find some things that make you smile

 

[Daffodil]

@Cap413 I can just imagine how you felt sitting in your room that night, listening to others having fun. I am so sorry you had to go through that.

I was bedbound too but am better now with treatment.

If you ever need anyone to talk to, please reach out..I would love to have a phone friend who understands the illness.

I am very glad you started this thread because at times like these, it can be a little cathartic and at least you know someone out there will read it.

Do you have any family at all elsewhere or none at all anywhere in the world?
xo

 

[Cap413]

@hellytheelephant thank you for the hug a tight one back

No, we weren't friends before we moved in together. My housing story is a long and painful one.... When I first got unwell and had to quit my job, I had to move out of my flat as I couldn't afford it anymore and moved in here. When I moved in, there were two girls here who were already having issues with one another but I was unaware of it - after a week or so of me living here, one of the girls started complaining to the landlord about me because I wasn't working. I spoke to her about it and it escalated, she started calling me names, lazy etc and told me to f*ck off. She was a really aggressive, unstable person. It was a really stressful difficult situation for me as she was trying to get me evicted. Luckily she moved out not long after and one of my current housemates moved in. She is the one I've known the longest, she is Spanish. I think because of my experience with the previous girl, I tried really hard to make sure that didn't happen again - I spent so much of my time with her, supporting her to write job applications (she was having issues with her English so I would spend hours translating), I cooked for her, we did yoga together, went to the gym and I provided her with a lot of emotional support. She would come to me often in tears and I would listen to her and help her. I thought we became close friends. About a year after she moved in, my other housemate moved out and my other current housemate moved in. She is Italian and really lovely. Around the time she moved in, I had to go into hospital for my CFS/ME and it was around this time that me and my Spanish housemate started drifting apart and she started getting closer to my other housemate. It started with both of them going to the gym together and only my Italian housemate inviting me. Then they would start cooking together but not offer anything to me, and I would be sitting there in the kitchen watching them cook together. I would tell myself that it was natural that they would get closer as I was limited in what I could do and not to make a big issue out of it. I would try really hard to not seem hurt by it and try to include myself in the conversation. So it was little things like this slowly over a period of 6 months and whilst I still interacted with them daily, I found myself less and less included in the little things. And the little things are what life is made of, I think. I remember sitting there and them talking about a tv series that they should watch together, with not even a reference to me. I just kind of had to listen to that and somehow include myself in a conversation which was about excluding me, which was really hard because I wanted to cry!

This was all before I relapsed badly, so when this happened I didn't have any energy to make all of the effort to include myself that I had been doing for the past 6 months, and there wasn't really much of a foundation for me to set anything on. I feel as though my Spanish housemate has used me up for what she could get from me and then when she couldn't get what she needed from me anymore, she's moved on to my Italian housemate. It is my fault as well because I have no boundaries with people and I do feel that supporting her so much is what contributed to making me so unwell, and I think that she knows that herself, but it's an uncomfortable topic, so it's easier for her to ignore it. It's just a very tricky uncomfortable awkward situation.

Thank you for your comment about social housing. It's really easy to get into a negative frame of mind when you're feeling so low about everything else. Although there are a lot of bad areas where the social housing is, you're right, it's highly likely that where I live there will be a lot of people in the same position as me which is helpful to keep focussing on. Thank you for your kind words and for taking the time to write to me

 

[Cap413]

Hi @Hugo thank you for your message. I'm really sorry to hear about the breakdown in your relationship, I can imagine how difficult it must have been for you to continue living with your ex partner. It's horrible isn't it when you feel as though you're not wanted or unwelcome in your own home. Even more so when you don't have the energy to go anywhere... I feel as though I'm stuck here so have to face the awkwardness daily. I'm sorry that you got more ill when you were dealing with it.... yes it isn't just the stress that can make us worse it's just how often we seem to pick up other peoples infections. I'm glad to hear that your situation improved, but really sorry to hear you contracted Lyme disease - I have heard from mutual friends how impactful that can be on the body and how long it takes to recover from - if ever! Thank you it's the depression at times which can make a simple sounding situation feel so much worse to deal with. At least I am more stable now and have accepted where I am with my health. It's taken me a while to accept that I shouldn't have to apologise for being unwell and it's ok to be unwell.... but I'm slowly getting there.