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I just need to say that I exist

(32 Posts)
agoodblue Sun 20-Jan-13 17:42:06

Because I'm not sure who knows that I do, and it's making me feel really sad. I wanted to reach out somewhere and the relationships board seemed a good place to do so, because this issue is about relationships.

I have a disability and at present I'm feeling very forgotten. I live with another woman in a flatshare who is lovely but she's always out. I don't work so don't have work colleagues, no children either. I do have good friends, but I'm not well enough to get out to see them more than every few weeks. And of course, they are really busy with their own lives; their children, their husbands, their jobs so it's not their fault I don't see them more.

I have not seen anyone in 5 days (other the housemate for about an hour one day when we watched some tv). I'm not going to see anyone until next Friday, when I go to volunteer, which I do for 2 wonderful hours a week. And I'm struggling so much with being so lonely. My disability has made me isolated for 10 years because of the nature of it; basically fatigue prevents me from doing all sorts.

I did have a partner, and it was bloody brilliant, knowing each day that someone was going to come home each evening, someone to laugh with. It was a good thing that relationship ended though and I am actually making the effort to go out on dates now (though Christmas wiped me out so I haven't been on one in awhile). I'm joining a couple of new social groups in my city because I do need to get out more. And I have all sorts of hobbies which I pursue in the day, which are not too tiring gentle but really fun. I have a lot of interests, which is lucky.

But I'm still struggling. I love people. I travelled a lot before getting ill, I felt passionate about seeing new places and meeting new people. I'm not suited to sitting in a house by myself day after day, year after year. But I'm not sure what I can do about my situation. I don't have family in the area and I can't move back to them as they live very rurally and my social life would shrink further.

Thank you if you've got this far. I'm not sure what I want from posting here. Support I suppose. Ideas to change my life (is such a thing possible?) And just for one moment not to be forgotten, because right now it feels like other than my parents everyone else has forgotten I'm sitting here, alone.

My sister was diagnosed with CFS/ME about 3 years ago. She went to the doctor, had lots of tests, then was diagnosed with CFS, and they recommended CBT. She says that NHS CFS departments are very depressing!

Because the NHS didn't seem to have a good idea what was the cause and what might help her she tried a range of 'alternative' therapies as well. She tried them all pretty much at once, so we're not sure what worked for her, I've written a list with her thoughts. She was determined to get her life back, and we did a lot of reading of books and the internet to try and find anything that would help her. Before being ill she was very active, and then suddenly she couldn't work, play sport, go out, talk to more than one person at a time, her sight blacked out if she did too much and she was back in bed recovering. It must be so so hard to go from an active and full life to what she was living.

She went from not being able to walk for even 5 minutes to playing a bit of football in about a year. 3 years later she is playing 90 minutes of football every weekend, working, life is pretty much back to normal smile

Because CFS/ME is such a broad umbrella covering what may be several separate diseases, these may or may not work for you - I really hope one of them is useful.

She highly recommends Perrin massage www.theperrinclinic.com. If you are anywhere near Birmingham I can pm you details of the bloke she saw. It's expensive, but did seem to offer an explanation, and concrete results. I think she credits the Perrin massage above all with her recovery.

She also saw a dietician, took lots of supplements, cut out wheat and dairy for a while, then gradually reintroduced them. All under the guidance of the nutrition lady. They even ended up sending a poo sample off to Germany to be analysed! Possibly TMI there! She stopped drinking alcohol completely, and improved her diet. Now when she gets the early signs again she makes sure her diet is balanced and cuts right back on the alcohol, and that seems to sort her out again. She doesn't take any supplements any more, and has no problem with wheat or dairy, so that was probably a red herring. She does now eat more veg and less pizza, burgers, processed food, her diet was pretty bad before!

She got herself out of a stressful situation - she had some stuff going on in her personal life that was very stressful at the time.

I really hope some of that is helpful. And I hope you enjoyed meeting up with your friend on Saturday night.

amillionyears Sat 26-Jan-13 11:34:06

examiner99, I wanted to pm you, nothing sinister, nice I hope.
Have you namechanged?
If it is all right with you, can you pm me please?
Feel free to search me if you want to see that I am an ok poster.
Thanks.

[sorry for interuption]

agoodblue Thu 24-Jan-13 19:06:59

Fuzzpig thank you for the invite, I will try and make my way over to that thread in the next few days. It's always good talking to others in the same boat.

Phoenix, will definitely look into singing and I do love singing, I'm just not sure I have the energy sadly. I joined a choir here last year, had a great evening singing and then couldn't get out of bed for 3 days I felt so ill. But I need to try a second time I think; so glad you enjoy it.

I have a friend now popping over on Saturday night which will be good, and two other friends coming for coffee over the next 2 weeks plus my counselling session. Things will start looking up very soon, I just need to get through January and February because this lack of light has a massive effect on me (have a light lamp, must dig it out)

I need to reply to a couple of kind pms sent to me, I started replying to one and managed to lose it all so apologies. I'm much more tired than normal right now (probably thanks to anxiety).

Join Rock Choir.

I joined last year, when I was suffering from anxiety and depression, in a constricting job and struggling trying to concieve a baby (diagnosed with severe endometriosis). I wanted to do something that just meant I'd go out once a week, do something fun... and it has changed my life.

Sounds silly but just meeting up and singing (no vocal ability required, don't worry!) has been soooooo much fun. I feel better in myself, I am now pregnant, and I really believe that it is the main reason my life got turned around. Check it out, anyway, hopefully they have one in your area you could go to a taster session for, to see if its for you.

Can't recommend it enough.

fuzzpig Wed 23-Jan-13 06:57:15

Have you seen the spoons thread on the general health board, it's for people with ME and similar conditions. It's been a lifeline to me, having people to talk to about this incredibly isolating condition, because most people I know IRL just don't get it!

We'd really love to see you over there, we are a lovely bunch smile

foolonthehill Tue 22-Jan-13 21:05:30

Maybe a house rabbit: we had a house rabbit. He was gorgeous. happily they like to "do their business" in the same place so can be easily trained to go in a litter tray which is easy to empty and not smelly as they are vegetarians! They like a nice cuddle, a hop around a cozy lap or bed, ours would do a couple of tricks for entertainment (not at dog level...just begging and hopping into a hoop for a treat).

Just a thought. hope you continue to find ways to meet people and look forward to the better weather.

susanann Tue 22-Jan-13 19:49:57

you sound more positive now. thats good to see.x

agoodblue Tue 22-Jan-13 19:27:36

Candle/music/audiobook and a bath sounds great Katie.

Fuzz sorry to hear you have M.E too, that's what I have in addition to other things. You know it's interesting, I think when I got ill I thought 'it'll take me a couple of years to grieve then I'll come to terms with it and live my life' but that isn't true. I grieve in one way or another every day. It never gets easier. I have found a way to live a good, meaningful life in many ways and am grateful for all sorts of things I have. I'm still so priviledged compared to many around the world; I'm well fed, have friends, have a roof over my head and money in my bank account for upcoming bills. But each day it's a feeling of 'how did this happen? How can I reverse this and have all the things I so want (I can't), how on earth can I cope with years more of this lifestyle?' It never gets easier.

A couple of hours in a cafe would be good. There's one a 5 min drive away. When the snow clears I shall try and go. Last time I went there the waitress kept calling me darling and I almost burst into tears at someone being kind. But will take waterproof mascara and hankies next time. wink

I am feeling positive about the counselling. I have been saying I'll go for years and put it off because of the cost, but it's important.

MadBusLady Tue 22-Jan-13 18:47:00

Your last post is quite heart-rending. Agree with what fuzzpig says about a grieving process - I think it's true of all kinds of chronic illness, physical and mental.

On reaching out: I read ages ago about a little experiment. A group of people were asked to make a list of people who they'd be thrilled and happy to receive a call from on a Saturday afternoon asking them if they wanted to go to the cinema that night. Then they were asked to make another list - of people they themselves would feel able to call and ask. The second lists were much shorter! Moral: people are generally much happier to be asked to do stuff than you think.

One other thing, this might be an unsuitable suggestion so please ignore if so, but would whiling away a couple of hours in a cafe whenever you feel up to it be any good? Maybe that's not interactive enough. It would get you outside and mean you could take advantage of any energetic windows you have though.

fuzzpig Tue 22-Jan-13 18:18:27

Just wanted to say hello, and that I understand.

I have CFS/ME and POTS, just diagnosed last year. I am 26. I feel like a shadow of a person!

I am around people a lot but feel very lonely - that sounds ungrateful as I know I am lucky to have my DH and DCs. My colleagues are lovely, and I know a few local mums, but due to numerous MH issues I don't get close to anyone anymore, even though I really want to!

I am thinking seriously of cutting my hours as work is making me more ill but it's hard to find the balance between physical exhaustion and mental wellbeing isn't it.

I do believe that you go through a kind of grief when you have a disability, you have to say goodbye to the person you wanted to be, who you thought you'd be.

examiner99 Tue 22-Jan-13 17:53:59

I can understand why your situation makes you so sad, especially when you look back at the child you. You need to keep busy but that exhausts your body and feeds your sadness - a classic spiral. I really hope the counselling will help you [smiley]. As for everyone, I guess it is a question of taking one day at a time, and plan something to make every day one to look forward to.

susanann Tue 22-Jan-13 17:42:21

Sorry to hear youre so exhausted Blue. Just rest, we will still be here when you feel better. x

Sometimes in order to destress I put on the audible version of Hillarys books, light a candle and relax. Better than meditation and less strenuous than Yoga wink

agoodblue Tue 22-Jan-13 17:27:36

Sorry to go awol. I'm so shattered I'm struggling to do much at all and not coping too well, mostly because of exhaustion.

Dequoi just cats! I should look into guinea pigs but not sure how I'd clean their hutch out. My carer has enough to do already and I couldn't manage.

Kiwi so sorry to hear about your situation. I'm lucky I don't get too bored most of the time because I love my hobbies but sometimes it is a real killer. I love how many pets you have! Will plan on messaging you (and the other kind people who have offered to chat), but forgive me if I don't get round to it at the moment, it'll be because of exhaustion.

Were I'm not sure if I can say, would be so embarrassed if a friend read this and recognised me.

It has been a bad day. I sorted a couple of dates/coffees out and am having to contact people to cancel as too tired. I've been lying here terrified my parents are going to die and no one will remember I'm here or ever ask if I'm ok. As a restult I've contacted a counsellor, my anxiety about this has been out of control for a long time and it just feeds my exhaustion. I don't like living with this level of fear. I just feel very sad and baffled how this is my life when as a child I was so ambitious and hard working and healthy. I never dreamed this would be my life. I'm 30 and I've been in bed for 10 years while everyone else lives their life. sad

werewolvesdidit Sun 20-Jan-13 23:26:32

Whereabouts do you live agoodblue? (if you don't mind saying).

kiwigirl42 Sun 20-Jan-13 23:24:59

Its really difficult when you have chronic illness. I have chronic migraine - 5 yrs ago I had a career, friends and fun. now I have none of those but I'm still me under the pain. My main problem is boredom. I have had a really sore head for the past 7 days which is getting me down and I am so bored. Pets help alot I find. I have 3 cats (2 lovely Ragdolls and one Mog), a choc labrador and a bunny. I've been thinking of trying to learn Arabic as well! Message me if you like to chat!

dequoisagitil Sun 20-Jan-13 23:07:57

You've done brilliantly, well done grin. At least you've got a couple of things to look forward to.

Is your housemate allergic to all pet-hair or just cats? Guinea pigs are good little pets, they like attention. Fancy rats too, I believe.

agoodblue Sun 20-Jan-13 22:45:54

I can imagine it can be very lonely with children ktef. It is easy for me to idealise family life because I'm so desperate for it but I know that not everyone is blissfully loved up and happy in their relationships or situations. Or even for people who are, I'm sure it can still be a long, lonely day.

Right, I've phoned 2 people tonight to ask them about coffee. One is sorted for a week's time, the other will get back to me as her mum is in hospital. Date sorted for Thursday night (he genuinely seems really interesting and kind). And that's all I can do for tonight. But it's a start. I still feel absolutely crushed by loneliness right now, and really scared I'm not going to stop feeling like this. But I'm glad to have reached out.

ktef Sun 20-Jan-13 19:14:46

Hi blue. Sorry to hear you are feeling lonely. Just thought I'd suggest that you definitely contact your friends and tell them how you feel, particularly the ones with children. I find, now I have children, that its very easy to be very busy, but busy with washing clothes, school runs, lunches, nappies etc. But I can be doing all that and feel really lonely too. I would love it if someone asked me for advice, or asked me for a coffee. But sometimes I think all people see is a busy person with children and don't realise that you can be physically busy but still emotionally alone and unoccupied. Not sure if that makes sense, just trying to say don't be put off talking to your good friends. And keep posting here if you are feeling blue.

Sunnywithshowers Sun 20-Jan-13 19:12:04

Hello again good. A lot of us on MN (including me) are sprogless for various reasons, so you're not unusual. There are some lovely men on here too.

There are various meets, I haven't been able to get to one yet. Some are in the daytime and more 'family' affairs, where others are more geared around chatting and getting pissed. grin

I love writing too, I've read Bringing up the Bodies and I luffs it. There's a big section on here for book lovers, btw, and writing.

susanann Sun 20-Jan-13 19:05:12

Glad posting the thread has helped. We could be text buddies if you like? PM me if youre interested.

agoodblue Sun 20-Jan-13 18:51:01

Thanks for all the replies! It means a lot.

I was referred to a day centre a few years ago but found the idea very depressing. And to be totally honest I would have found it exhausting, and I decided I'd rather use my energy going to a social group which didn't have anything to do with disabilities. Which perhaps was silly of me, and maybe I should look into it again.

A cat is a good idea, my housemate is allergic but perhaps when she moves on (which she is thinking of doing soon) I will do that. A pet would be a brilliant companion. I'm a bit scared of being too unwell to get up and feed it, but I'm sure there's a way round that.

I do think it would be good for me to try and sit in a library one day a week, or take up a new course. My fatigue is very crushing and I get scared of taking on new things in case I make myself much worse. But I do have a couple of dates in the diary to get to some groups here over the next month (a knitting group and a social group designed to help you make friends). The place where I volunteer is lovely and they're always asking me to come in more, which of course I'd love to do as we have so much fun, (we drink coffee and eat chocolate with the tiniest bit of work thrown in [grin} ) I'm usually just too tired to do more. 2 hours a week of sitting typing is, according to my stupid body, the equivalent of running a marathon already.

Katie, Hilary Mantel is a god! So talented. Looking forward to getting on to Bringing up the Bodies.

Cogito, I love 'not drowning, just waving!' The idea is not to say 'oh shit I'm lonely come and feel sorry for me and sit with me,' but 'come and have a really fun night over a glass of wine.' I'm terrified of someone hearing the former in my e-mails/texts.

I hope it doesn't seem like I'm rejecting all your ideas too much. They are good ones and I need to make more effort. Just in the last half hour I've got my bum onto match.com and e-mailed a couple of guys and e-mailed one friend and asked her for coffee, so just posting the thread has helped. I just wish I could click my fingers and magic up a boyfriend because I know that would make all the difference in the world. I know too that lots of people out there are struggling with loneliness even if they have partners/children. Loneliness is vile.

susanann Sun 20-Jan-13 18:30:32

Hi Blue sorry to hear youre lonely. Its a horrible way to feel. Could you do more volunteering or does your disability stop you doing more? Im unemployed at the moment so spend a lot of time on my own. Thats why im on here so much! Could you make a start on learning french or arabic? Are there any day centre type places that you could go to?

dequoisagitil Sun 20-Jan-13 18:13:03

Sounds like you're doing good things by joining some groups etc.

Maybe gently poke your friends a bit to let them know you're a bit down & lonely.

Can you get out to a coffee shop or library during the day so you can at least people-watch and hopefully meet other regulars?

Get a cat?

amillionyears Sun 20-Jan-13 18:11:42

Hi, agoodblue, nice to meet you.
I think you will be made to feel very welcome, and a lot less inconspicous, on MN.
Dont think I can personally help much with your practicalities, but MN is full of people who can.

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