I've become a recluse.........

[purple-lou]

I've been ill for only a short time, about 4 months. I was diagnosed early on. Over the last few days, I've realised that I actually avoid contact with people. Before my illness, I was outgoing. I find it easier to be alone. As soon as my partner has gone to work and the girls are at school, I am alone all day. I've had a few family members being horrible regarding my illness. I think this has made me retreat into myself. I'm quite happy to be like this. Does anyone else have any similar stories to tell? Xxxx

[Thaddeus]

Hello Purple

I think a lot of us can relate to this, A lot of illnesses can be isolating, and lups in particular seems to have many ways or wrecking a social life. And we can all relate to not wanting to deal with other peoples ignorance and misconceptions of what is ill.

I have found being in a support group to be be very helpful in this respect, especially as I dont have to explain or excuse anything, I know that what I say will be taken on trust and that when I say that I am exhausted, the other members will understand this in a way a non sufferer cannot, however well intentioned.

[purple-lou in reply to Thaddeus]

Maybe I should join a support group if there is one in my area. Thanks xx

[Lupo30]

Hi, I'm exactly the same. It is easier - if I go shopping with anyone, they always get fed up of walking slow and don't want to sit down. I've just come to terms with it now that it is best to stay in, at least if I get tired and can't remember things - I'm at home. It can be very lonely and isolating but unfortunately they're are no easy answers. Hopefully you can start to enjoy your alone time and try and build your energy for when your children come home, I'm sure they entertain you! You will always have people thinking they know everything and being cruel about your illness, ignore them - rise above it. Things may improve though and you can venture out. No one knows what is round the corner. Take care.

[megs_tom]

I feel the same. I find I get very anxious leaving the house and feel safer being at home. I get paranoid when I go anywhere as I have a patch of hair missing (it can be covered by the rest of my hair but when it is windy I worry people can see it), and quite often I am limping in some way as my legs, back or hips will be causing me bother. I find shopping hard as my memory is so bad and even with a list I always forget something (thats if even remember to take the list,lol) and then carrying it home will cause me a lot of pain. I also find I avoid socialising as trying to explain why I am uncomfortable is difficult and my brain fog can leave me feeling stupid during conversations! How did you go about finding a support group? Xxx

[mstr]

H Purple-lou, totally relate to your post as it has seemed easier to spend time on my own. For a few reasons think. I find listening to music and dong things at my own pace can conserve my energy for when do see friends. I think without realising I have also 'tailored' the activities outside too such as a stroll around gardens with a friend and a coffee rather than going retail shopping as the lights inside the shops seem draining for some reason. I think I am finally getting a balance of quiet time and time with friends/family. Good idea above about the support groups I think I will make a call. I did ring the Teesside Group a few weeks ago and no one got back to me:(, so will try again. Unsure which group would be best as I seem to be in the middle of the South Yorkshire Group and Teesside. Marion

[purple-lou in reply to mstr]

I don't actually know if there is a support group in my area. I think that there is information on support groups on the Lupus UK website. I have just watched their dvd and it is very good. Xx

[Alexandria]

The only thing I would say about being on your own is that Lupus robs us of so much if you are not careful you could end up feeling so isolated that you could leave yourself open to mild depression. This is what happened to me but I didnot know it was happening until it was too late and had to seek treatment. (been diagnosed for 12 years Fibro and Lupus). I have been running an informal support group for nearly 2yrs (in Kettering Northamptonshire )and I find that it has been invaluable in keeping my spirits up and I have met some lovely people. If you can find a group near you you should give it a try. All the best.

[Thaddeus in reply to Alexandria]

This is a good point, and we do need to keep some sense of who we were before this horrid illness robbed us. I remember giving up, running, swimming, martial arts and so many days out with my children, The thing that really hurt was when I sprained my wrist while kneeding dough one eveing. I felt like it had taken everything.

You will get your life back, so dont forget it.

[grannyjogger]

I think a support group is a very good idea. There isn't one in my area yet but I hope to be able to contact other people in my area through the Lupus facebook pages. I have two wonderful kids (now grown up) who are very loving and supportive but I don't think they really understand how much this condition can affect you at times. I hope you can find a support group that will give you a boost. Good luck xx

[janiceray]

I agree with you all.

I live with my Husband and he does not understand or want to!and if ill he asks what is a matter!!!Men.I have had Lupus over 25 yrs.

I belong and a member of Lupus u/k and with Lupus South Wales with out these I don't know where i would be.

you take your life and live it how ever slow or fast, pain & pain free.get out don't let life pass you by because of the ignorance of other people do what is right for you and live with no regrets.

someone said about the DVD ask Lupus U/k to send this to you it will cost £2 to cover P&P

they will also help you get in touch with someone in your own area,

So go girl.

[natal1a]

I totally know how you feel and I want you to know that feeling that way is a perfectly normal way to feel in this situation. I haven't been diagnosed with lupus but something is definitely going on in my body and I have a follow up with my rheumy next month. I think I can relate to all of the comments above, that it is just easier because we know what we are capable of. I would say it is good if you could maybe slightly push the boundaries a little, so if there's something you feel anxious about doing, just try it. These should be small things though, even just starting by maybe going for a walk on your own, then going for a walk with a friend etc etc. I do understand what you mean though, I get anxious about feeling exhausted and having to explain it to people. I had the same thing on holiday last week, my friends made me go out as they thought there's something mentally wrong with me and that it would 'do me good' to go out. But I was PHYSICALLY exhausted and when I said this I got snapped at!! But I know that that was an extreme situation, a late night out, which I won't be doing in a hurry again and I don't enjoy that much anyway. But compare that to a nice relaxing walk, or maybe treat yourself to a pampering day I guess for me it's about prioritising and this sort of illness makes you realise what's really important and what you really enjoy doing.

Wow I really do waffle once I start, sorry if that made no sense! Take care x

[purple-lou in reply to natal1a]

It made lots of sense and cheered me up on a very bad day. Xx

[Thaddeus in reply to purple-lou]

I am in a couple of facebook groups -which are great, it is nice to know that they are always there and always fighting my corner. You can even have a laugh at the expense of this nasty illness.

[caninecrazy]

i can understand how you feel. i miss out on days to the beach,zoo etc if the sun is strong,watching my son and nieces and nephews get excited about thier fun filled day and me being indoors or taking a slow walk with my dogs taking the shady-est route. its crazy trying to avoid the sun. thats one thing i find hard explaining to friends and family.

i cover up,wear long sleeves and total sunblock etc.

when i do go out i pace myself as i too tire very quickly mentally and physically. i too have lost confidence but strangley i feel "braver" when out with my dogs?

i am looking for a lupus contact group near me now

[Blueeyes57]

Hi everyone. I have been feeling so fed up and reading your posts makes me feel a little less isolated and a tiny bit less at odds with the rest of society! This heat has just magnified my sense of isolation as I am sure it has for most of us. i can manage going from fairly cool house to car with Aircon, but anywhere else even with hat and cream etc, is making me feel like I have the worse ever flare! No point moaning to gp (unless infection or something he can fix he is little interested unfortunately) or Rheumy as it is me refusing to take azathioprine for great the side effects are worse than the disease ( I am sure it is effective if you have major organ involvement but thankfully I don't). I just wanted to say to everyone else, thanks for sharing it does help put things in perspective. Here's to a little less sun (sorry!!) And I hope we all feel less"lupie" soon!!😆