Not quite myself - Isolation and all

[JW77]

Hi all,

I'm not quite myself.

I'm usually fairly active, actually I am considering alternate day dialysis.  My results are pretty good. But its been nearly 8 years on home heamo, with 3 failed tx, cancer and meningitis behind me. Its putting pressure on my family, i.e. parents who still take a lot in my care, with my mother as primary carer for home heamo. I lost a lot of confidence and independence in some areas of my life such as driving, cooking etc.


I'm trying to move forward, but don't find it easy to socialise in the mainstream, (mostly boozers round here, and excess drinking was never my thing, even with a transplant ) Theres a few local groups I've been to which are OK, but contact seems to stay in the group.

I'm trying to move in with my partner, who has MS, in another part of the country, and so far we haven't managed to find property thats suitable for both our needs.

One of my few best friends, who knows me well suggested that displacement and disillusionment  along with depression seemed accurate of of my moods.  And it does make sense..  A lot of things don't seem 'real' some of the time.

I 've realised that although home heamo is great, I'm actually very isolated... I don't seem to be able to follow my interests..

Added to the fact the people I see the most are my aging parents, who care for me much but are going to end up needing care themselves, and a carer who won't accept care..  It seems pretty tough.

Seeing my consultant tomorrow, so we'll see..  He's usually very happy with my results, and says I'm 'better than a lot of his other patients' at self caring.

Short of going on holiday there's no respite for carers either, which is a bit of a tense point at times..

To top it, it seems our UK Gov has got itself into a mess..  Which might turn out to be the kick in the pants thats needed, but people are gonna suffer.


Anyway,  just wanted to get that out..  Positivity welcome  and I know I've not posted on here for a while..

[iolaire]

Sorry to hear your stresses. 

Regarding Isolation - around here (US) people meet up with people of similar interests via http://meetup.com.  These can be sports oriented, hiking, biking, etc., cultural oriented coffee clubs, dinning, movies, museums, to spiritual with mediation or yoga like sessions.  Sometimes my wife and I will attend some meetups just because they plan cool things that think we will have fun at the event (i.e. a Spring Wildflower hike where someone would show us things we would not see on our own, or an music event at a embassy which we probably could go to on our own but we don't know about it without seeing the meetup posting).  But generally the people attending meetups are single of ALL age groups.  Some are age specific and others are open, you can tell by the member photos who is drawn to the site. 

Maybe doing some events like that would help you feel more connected and less isolated?  People are generally fairly accepting at these things.  The nice thing is people are there for some specific interest so everyone is on a common ground and can relate to each other.

I looked at a random UK city of Glasgow it does look like the site is fairly active in UK...

[kickingandscreaming]

I'm not sure I have anything positive to add except to say that kidney failure IS a lonely disease.  So few people out there even know it exists let alone understand what we go through.  Even my closest friends seem to have only a perfunctory interest in the details.  They check in and care, but don't delve and i don't push it on them.  That's why I tend to spend a fair amount of time on this forum.  It's a community of people who do understand, and that lessens my feeling of isolation.

I'm sorry you are feeling depressed, but with all that you describe, it is understandable.  I do PD and not home hemo, and I've only been at is for a few months.  But I can project into the future the day to day drudgery and isolation of it all.  And even if you're doing well, having an illness like this makes you feel vulnerable.  Perhaps you could cobble together some combination of home hemo and in-center just so you can be around people some time and have somewhere to go.

As Iolaire suggests, it's a good thing to meet people around your interests.  But first, you have to know what they are.  If you could pursue anything--without limits-- what would excite you? Is there some version of that that you could pull off right now? Then look around to find others who share that interest or bring them together yourself.  Sometimes things can seem very bleak but can begin to "move" with small steps.  Best to you.

[PrimeTimer]

Pets are a good interest for some and they sure as heck offer a lot of comfort and joy. Not everyone can have one or wants one but I know people with dogs tend to meet other people who are also out walking their dogs. Some people meet others at dog parks. There are even people who walk their neighbors dogs for that reason.

[JW77]

Thanks all,  I'm already on meetup.  There are one or 2 groups I'm involved in, which I attend when I've got the energy. I've tried a local pub quiz and frankly didn't find the group that appealing.  Nor do I care for noisy drunken people much these days. Talking of pets I was hoping to train our new kitten, but I think I've missed the window for getting her used to a body harness.  We don't have a dog these days. Often I'll see the events listed and realise I'm likely to be too tired at that time of day. I think there might be a dog group were you don't have to have a dog  ..


My main interests are kites and gardening, and photography and some adult interests...

 .. Finding people to join me , or integrating with others seems to be the hardest challenge.   I recently did a 2 week course on agroforestry production which was good, but exhausting.

I've just seen my consultant,  he's pleased with my clinical side of things, but there isn't a lot he can do about my mental health apart from the above suggestions..

Thanks guys...and gals..

J

[Bill Peckham]

So two things. For the last couple years I have been playing a game called Ingress. It uses a smart phone - iPhone or Android - to interact with locations in the real world. To play you have to go out into the world and get within 40 meters of a designated location. There are two teams, Blue (that's me) and Green. The quickest way I've heard it described is capture the flag meets geocaching. You can play alone but just about anywhere in the world there will be a local group of agents that get together at a park or a pub. They'll have chat groups, here in seattle there are hundreds of active players, and many different chat groups - ones for people with bikes, one for specific areas of the city, one for people who enjoy day hikes - out here there are many hard to reach locations at the end of steep trails. I've used Ingress as an entree to locals when traveling, getting driven around on unique tours of Grand Forks ND and Chicago.

The nice thing is you can play it when you feel like it, there's no schedule, unless you want to take part in a planned operation. I've been playing since December 2013, the game logs your KM walked, I've logged over 5,000 KM. I'm going to walk the dog now and I'll play while walking through the park. There are meet ups just about every night some where within a 40 minute drive. You can check the chats and respond to an action by the Green team sending you on a spontaneous adventure, or leading you to join someone else's adventure.

It's the only video game I play, and is probably not even considered one by people with xboxes, but there is strategy and competition and teamwork. The usual ages go from mid twenties on up, one player out here is a grandma who leads a whole clan of players. Plenty of kids play with their parents but it is almost always the parents who are most keen to play.

The other thing that seems to be helping me is an antidepressant - I've been taking Sertraline for the last five weeks, despite my skepticism it seems to be helping.

[JW77]

Thanks  I might check it out.