Allotment picnics and feeling hard done by

[cathie]

My partners family have finally organised the allotment picnic. Some of you may remember me asking what you'd do, and there were suggestions about folding chairs and bringing people along with me. But then I had a recurrence of that light allergy and so an additional reason for not going to add to the list:

- seating

- no loos (for the methotrexate dash)

- possible sunshine (which has materialised)

- marshy underfoot and generally damp

So we had one of those instant decision moments that it would be better I didnt go. So this afternoon I'm at home, wondering how everyone is getting on and feeling rather guilty about not being part of the whole thing. And at the same time feeling that it would have been better if people had tried to organise something that would not have excluded me.

I remember many years ago when I worked in London for an anti-discrimination body, attending a discussion about disability legislation and being quite surprised at how angry some of the disabled people were about how their needs werent taken into account. And how they insisted that society had to change, not them. And now I feel to be in a similar place. Why is it that we apologise - as when holding people up when climbing stairs. Sorry! I've got a funny knee! Sorry!

So why is it that we are angry and apologetic at the same time?

And what kind of adjustments should we expect people in our lives to make in things like entertainment and leisure things. And how far should this go? How do we get people to realise what is possible / desirable and what isnt.

Anyway to be honest I have had quite a nice afternoon doing some painting and catching up with the radio. But wouldnt it be better to be out with other people? I'm sure some of you out there will have had similar experiences.

Finally, has anyone noticed a correspondence on the Guardian website about living with chronic illness? It seems to have been taken over rather by people with ME, but I managed to get a plug in for the NRAS.

Have a nice afternoon,

Cathie XXX

[Hidden]

Hi Cathie - sorry you have ended up being excluded by what should have been a whole extended family occasion. I know that I would feel exactly the same way as you - relieved but also rather hurt. Basically my advice is to have it out with them all so that next year you can have your needs taken into account and feel part of it all. It's a bit unnecessary to put you through all this I think. But then I also know from having a mildly autistic and difficult eldest son and having grown up with two profoundly deaf sisters that the world doesn't readily adapt and people are remarkably insensitive and unimaginative.

Even those who have suffered themselves in one way or another can be obtuse about different types of suffering. So my suggestion is spell it out to your other half and ask him to do some negotiating on your behalf if you feel it's something you can't broach. I broached this feeling of not coping and being picked on with my choir mistress face to face and she is being lovely and considerate to me now - as are most of the choir members. But a few months ago I felt I had to adapt and sit behind pillars and feel humiliated by not being able to stand up for any length of time or hold the heavy music folders. I even considered quitting but that would have been daft. People, including ones nearest and dearest sometimes, need educating so please find a way to sort them out so you don't have to sit at home feeling excluded.

Better luck for next year - Tilda x

[Hidden]

Hi Cathie.

I really felt for you when I read this. It would have been nice if someone could have come up with some ideas for you instead of you having to think of things yourself and then to decide to stay home, because because...

I expect you did enjoy yourself in the end, but that wasn't the point I don't think. I feel like you really wanted to go and be part of everything and feel put out because no-one else bothered about thinking how it would be for you. i think the least you should do is sit the old man down and remind him.

Mind you I can tell you this. I really don't get on with my old feller's mother and father, I tried for years to fit in, then thought "ah sod it" We are poles apart. They are never going to change and neither am I, and this has nothing to do with my dreaded RA. So i started leaving myself out of family dos. At first it felt awful, but I got used to it, and look forward to this time on my own to do what I want. (Now of course I have more than enough time on my hands).

Funny old things, families.....

So if you really want to be included, do what Tilda says and tell them!!

Take care me duck Julie xxx

[Hidden]

Having said this about confrontation Cathie - I agree more with Julie really -i.e that it depends what you want to get out of this in future years? I have as little to do with my in-laws as humanly possible for similar reasons to Julie. If I got on with them, and heaven knows it would have been nice now my own parents are both dead and gone, I would have negotiated a settlement that made me feel less excluded than you did yesterday. But on the other hand if I didn't like them much anyway I wouldn't have bothered so you need to decide if they are kind people who are just being obtuse and would be prepared to jump hoops to have you there once they realise what they are doing. If not, then it may not be worth the resulting agro? Good luck let us know what you decide? Tilda x

[cathie]

Thankyou both for your very supportive and sensible comments. I havent actually decided what to do - this is a 30 year old problem which changes with circumstances. It does involve my partner's family, and I'm wary of rocking the boat as his inclusion is in a second family post divorce, and its all a bit precarious. I have decided that I will withdraw a little. I have initiated two birthday celebrations at our house for his half sister and her little boy. She is the allotment owner and hasnt responded to my exclusion very well. So I've said that I will support him if he decides to organise something but I will not initiate contact/ events myself.

As for confronting them, that is a bit more difficiult. He has told his father about me being excluded by events like this, but whether this will have any effect, I dont know. I am wondering if I should try to write a blurb as a prompt to people I come into contact with about what RA is like. For instance, new teachers when I meet them. Although we have a disability officer at college, she doesnt seem to have explained very well. Perhaps a paragraph to refer to might be worth doing, what do you all think? NRAS literature seems a bit over the top - too much - but perhaps we might get them to endorse a brief statement?

Tilda, I love your Ghadaffi metaphor on your blog. I'll respond to that later, but am being taken out to a German bakery for breakfast and must dash. (Yum)

XXC

[sylvi]

Hi, I had my eyes cauterised last monday and i had to protect my eyes. I have tinted lenses and i wore wraparound glasses on top of them as well as a hat. I'm sorry you didn't go to the picnic. As you say families who'd have them The saying you can choose your friends but you can't choose your family is very apt. If they are like that you were better staying home. Look on it as me time and indulge yourself. They don't know whats round the corner. They will need you before you need them.

sylvia. xx

[cathie]

You're right Sylvi, people dont realise that they may find themselves in a similar position. I remember helping one person who was visiting my place of work, helping him to get into a loo to empty his colestomy bag and thinking how marvellous and understanding I had been. But humble now as I think about him growing older with this problem for ever.

Hope your eyes are getting better and that you can keep in the shade. Not that there's much need for that here, its distinctly soggy

Cathie XX