The voice of experiences!

[Damaged]

How do those of you with severe chronic pain, manage the incredible isolation? I am sad the infusions will now be done in my home. I like going to the clinic. I spend all my time with my lovely fur babies. They are warm but not the best conversationalists 🐶

[helixhelix]

Sometimes I think our furry friends make more sense than most humans...but yes, interesting conversation is not a strong point.   

Are there any local arthritis groups in your patch?  If not, why not start one? 

[Damaged in reply to helixhelix]

There are a few groups, however, I am unable to drive most days. When I do I stay fairly close to home. Online is great but lacks the effect of conversation. It takes time for people to respond. My husband and I were just watching local news. Horrible fires in Alberta but I refer to a man leaving ER and jumping off the bridge. His mother asked that they contact her before releasing him. He died and the hospital responds with they followed procedure. Small comfort for that mom. In my situation I have had several times in which I tried to reach out. There is an eight week wait list for social worker. I passed as I feel others need it more than I do. The thing is I have limits. It can all be so overwhelming. We have an employee's assistance program. It is to provide counselling. I call and they make appointments to talk to someone. By te time they call the crisis is over!! I just need to get out of my head at times. Then you get on with all the things needing your attention lol

[Fra22-57]

Loneliness is awful. I don't have a pet just the internet to look at each day.I used to be very busy when I could work n it knocks you for six.I spend so much time on my own that I get a little aggrophobic. Family n friends have their own lives.I try to organise a weekend away from home with my husband every now n then and a holiday to look forward to

[latebird]

I send you good wishes as loneliness and isolation can make pain hard to cope with.I have found some escape in gardening and wildlife conservation.People are more important  as we get older but often we cannot have the quality time with other people that we need to get through the day .realistically,there is no quick fix.we have to muddle through as best we can.Life is a challenge with pain but can be helped by looking outward,taking small steps and being kind to ourselves and others along the way.best wishes to you.x

cr

[Hidden]

Thank you for putting this on here I am just starting to experience lonlyness and isolation for the first time in my life I have always loved solitude but that was a choice illnesses and lonlyness has brought a strange fear into my life too and when I found this site it has become a life line so thank you all for sharing

[cathie]

I'm very lonely too after knee problem has left me immobilised. I've found that it's affected close relations like with daughter and grandson who have made alternative support arrangements. I don't see them often even though they love 5 mins away.

My partner is very supportive and I do everything to make sure he keeps in touch with friends locally. We're quite politically involved and that helps for us. I do online courses, that gives me an objective for the day (art history mainly) and when friends do come I try not to show how low I'm feeling. 

I try to make the most of the contacts I have, am working towards a lunch with my physio who has really helped me. That's a milestone in early June!

Hope you can reach out successfully

C

[Damaged]

I had a great day today. My husband and I power washed the back deck and stairs. We  did my planters and a spice garden. It was so hot here today. I am looking forward to Mother's Day.

[hatshepsut]

I feel unbearably lonely at the moment. Part of it is due to the loss of my husband recently, but it's so much more complicated....I am trying to get through a massive flare, plus change of biologic, and the resulting enforced physical inactivity/pain and brain fog  have taken away most of my coping strategies....gardening, pottering,walking, reading, studying, thinking. No energy to contemplate meeting other people

Don't know what the answer is, daughters try their best, but have their own lives to lead, and their own grief to deal with. Presently, just trying to get through the next hour. And then the next. Sorry to sound so dismal. It's just so hard at the moment.

[CloudTreeDrive13 in reply to hatshepsut]

You can be in a crowded room and still feel lonely. Sorry to hear of your loss. You are dealing with big changes in your life at the moment and all at the same time. That's a lot for anyone to cope with. It's early days and you will not see light at the end of the tunnel yet. I quite often feel like you. I lost my mum when i was 19, my dad when 22. This followed by my brother and then sister 3 years ago. Now i have a brother and brother in law both fighting cancer. After my brother i am the last one left. Yep, life sure sucks at times.I will always try and get things in perspective and consider myself lucky. It doesn't always get easier but life goes on - for that i am thankful. Allow yourself bad days. Don't beat yourself up. Take care, thinking of you.

[bella-bailey in reply to hatshepsut]

So sorry to hear about your loss Hatshepsut,you seem to be going through so much at the moment,please try to explain to your daughters the way things are for you instead of trying to cope on your own.Hopefully you can get through the loss of your husband and their Dad together. Thinking of you at this sad time, gentle hugs xx 

[keeta]

Hi my heart goes out to you I seem to have had a bad time lately .and the hurt is no where near the heartache of loosing my lovely Mum yesterday.i would take all the pain there was just to have her back with me. Such a sudden shock .bless you my love .xx

[nomoreheels in reply to keeta]

So sorry to hear about your mum Kathy. My condolences to you & your family. x

[hatshepsut in reply to keeta]

So sorry to hear about your mum, thinking of you and your family. Mavis xx

[3LittleBirds2 in reply to keeta]

I am very sorry to read of the sudden loss of your mum.  My deepest sympathy to you and your family.

[3LittleBirds2]

I think we can all relate to the loneliness and isolation this disease brings with us...it changes us dealing with a invisible condition but in my case kind of for the better as its made me a lot stronger but I do still have my moments!  I've just had two big infusions and people think, ok, she must be alright now, but No it's just the  start of trying to get better really...I had a down day yesterday but picked myself up today...as what else can we do?  Best wishes to you and thanks for posting this!