tillytop is not doing too well.

dreamdaisy

I meant to put this on earlier but other bits of my life got in the way - sorry. :oops: tilly is feeling brighter today and has the unexpected treat of a day out so that is a good thing. She thanks you all for your messages, she has not read them yet but I am sure she will at some point. DD

mig

good afternoon tilly hope things are a little easier today,gentle hugs and warm feelings.Mig

Starburst

Afternoon Tilly. Lovely to hear today has been a brighter one for you. Sorry you've been having a tough time in general of late. Sending love to you. xxx

woodbon

Hello Tilly, ((((()))))) Lots and Lots of love and good wishes to you. Hope the hug helps!

Ankyspond

Just had very quick pop in from France and this thread jumped out at me, sirry to hear you not feeling so good Tilly, sending you hugs from France.

Xxxxxx

tillytop

Oh you lovely, lovely peeps. Thankyou all so much. Can't tell you how much I appreciate it. You'd think by now I'd have worked out how to cope with this wouldn't you - and I have done so, reasonably well for the past 16 years. But now? Well I just seem to have fallen apart big-time and it ain't getting any easier. Over the past weeks I have cried all over my wonderful, long-suffering husband (frequently), our lovely DD (frequently) my Mum and Dad, my lovely friends Nickie and Linda, my Sister-in-Law, and the
hairdresser (!). And I seem to spend rather a lot of time crying to myself too. I've tried giving myself the "pull yourself together" speech - didn't work. I've tried the "all you can eat to make you feel better" approach - that didn't work either (although I keep trying).

But I had a bit of a "eureka" moment yesterday when I realised how much of my distress at the moment is caused by the ongoing - and utterly futile - battle of trying to get people to understand. I don't know quite why that feels so important to me, but it does. My brother and sister in law were really pleased to see me yesterday, which was lovely but my SIL's first comment (on seeing my wrist splint) was "so what's all that about then?" (Eureka moment number one). Later on, she and I were talking about some exercises she had been given by the physio for her back and we were discussing whether they would be helpful for me. She said well it's very simple, you just lie on the floor.....and when I told her I couldn't get onto the floor she was completely surprised. (Eureka moment number two). Finally, she told me that "on a positive note" there are lots of people worse off than me (I know there are) and that I was one of the lucky ones and "a success story" whatever that means. (Eureka moment number three). At this point I got very upset and went to stand in the garden in the rain to compose myself. Although I enjoyed the rest of the day, underneath I just felt very embarrassed and upset and stupid.

I think all this comes down to the old question of acceptance and, whilst I thought I had got my head round this years ago, it seems that I haven't and that's what I need to address I think. How, I have no idea so any tips welcome.

On a positive note I am going out for a cuppa and cake with my Mum this morning and I am looking forward to that.

Thanks again all (and thanks for listening, if you still are...)

Tilly xxx

mig

Acceptance is such a personal thing if you crack it let us all in on it,sometimes a good cry is what is needed it helped me when my fingers locked that and the swearing.Hope today is better than yesterday and tomorrow even better.love Mig

theresa4

Hi Tilly
sorry to hear youre not feeling tooo good, I missed all of this as I havent been on for a while.
Just a quick post sending you hugs and positive thoughts
Love Theresa xx

suzygirl

Tilly, I know where you are coming from with the trying to get people to understand. I wish people did have an idea of what it is like. It makes you feel so alone and isolated. Personally, I only let people see me when I am 'ok' and hide away when ill, so I probaly don't help matters. However, I try to save my energy on bad days for the family. They see me struggle and even they don't always get it.

Somedays I feel lazy for being sofabound, then I try to go out and realise I can't actually walk and thats why I am sofabound. So I guess, even I don't 'get' it really. As for acceptance, I don't think we ever fully do. You get it sorted and then, bam it hits you all over again.

Lets face it we are young(ish) and unable to do things most 70 year olds can do. My mom does my cleaning!!!! :shock: Who of us wants or would choose this life?? However, I have learnt so much through having this illness. I have made good friendships, have time to do things, so it is all far from doom and gloom.

Yesterday I felt awful, flaring, temp etc, pain. Sat down with my book and a cuppa, lit my oil burner with the lovely smell of lavender and found peace. I ordered a couple of cook books from a website as I want to master a good curry dish. I enjoyed reading them and planning what to do when well.

Stupid stuff like that gets me through. Oh and my Izzy!!! Then I log on here to see how my cyber friends are doing.

(((hugs))) to you x x x

barbara12

Hi Tilly my love
Sorry I have not been about much, but I just want to send you loads of hugs..((((((())))) and I have been thinking about you.
I do think we mostly all go through this thing of acceptance...Iv not got there yet,I do wish you well with everything, and you know were we are when you need us.

frogmorton

Hello Tilly

Soooo good to see you

So good to know you are hanging on in there.

Hope your SIL had one or two eureka moments of her own yesterday. Fingers crossed.

As for acceptance l think (myself) that illnesses like this one which chip away at you a bit at a time (not all in one go like say..... a spinal injury following a car accident) make it harder to accept.

Something hurts like agony hurts....you get your head round it....either learn to live with it or it eases. Life is on an even keel then....from no-where another pain comes and you are back to square one again.

People who are outside of it would rather we be well so they never really accept it - just ignore it when we are not with them. They want us to say we are 'fine' because they can't really face it (could it happen to them :shock: ), and some (incredibly) resent the 'attention' we get.

But Tilly this is the one place where you CAN bawl and know you are accepted, believed, not ignored and above all understood.

Love and hugs

Toni xx

dachshund

Hi Tilly
i'm sorry about how you feel and i hope you feel better soon
people who have'nt got arther dont understand what its like to live with it.
take care ((((((((tilly))))))))
joan xx

julie47

Hi tilly

It is so good that you are back, we have missed you.

After 23yrs of ra I still cry every so often. I also like you have accepted this disease but as you say, we adapt and get on with it and just as we have managed that hurdle another comes along and we have to start again. Sometimes it just sooooo gets on top of you.

I really hope you start to feel much better soon, sending you some of my positive vibes (quick grab em now ) and lots of hugs(((())))

I also hope you had a lovely time with your mum and enjoyed the cake. (hope it was the size of a door stop )

Thinking of you
Love Juliepf x

weejean

Hi tilly

I am so sorry that you are feeling so down and I really do sympathise as I have had very similar feelings lately myself. I have had a good cry, loads of support from my husband and my good friends here have lifted my spirits in their own unique way. I cant give you any decent advice but I just want to say that I am thinking of you and hope you can find the strength you need. Take care xx

Poppyg1rl

Hi Tilly,
I'm sorry I've not been around much, lots going on and none of it nice.
I think I agree with you, I used to spend a lot of time explaining why I have wrist and finger splints, and why I have a stick etc...then I realised that just can't be bothered with it anymore, I've enough to deal with at the moment, those around me, my family and friends know what's what because they see me struggle, I don't hide it and I don't feel any shame. I am what I am but I cannot be bothered explaining it to outsiders.
This week I've had to deal with my Grandads death, sort out the phone calls to various family members telling them, go with my nan to get the certificate etc, I was asked why I have a stick by one of my nan's nosy and snobby neighbours I told her I use it to hit nosy people's ankles with her face was a picture!
Anyway Tilly, it's ok to feel upset by people's ignorance, but remember it's their ignorance and their problem ultimately, not yours. If they can't be bothered to listen, empathise and try and understand it all from our perspective then I'm afraid I'm just not interested in them and I don't class them as friends. Love and hugs honey xxx

hileena111

Hi Tilly pet
Glad to see you on line again
I have posted on this thread before but doing it again to say you are not alone in the way you feel. A good cry works wonders at times.
I admit I havent been as depressed as you sound but I have my minutes In fact I've had a good cry today......think its because we are going away tomorrow morning and I expectred to be able to pack and get ready as normal....{well normal as in having OA} but this blasted fractured pelvis is holding me back and it is taking so much longer, still not completely finished and i am so sore going up and down stairs and from room to room to get things ....I just got so frustrated.....
You keep going the way you seem to be going
Love and (((((())))))
Hileena

dreamdaisy

Hi tilly, as you know today I too have cried, and it happened with the most unexpected (and undeserving) person. I reckon we are all in the dumps, yes? I blame the summer, it's a totally stupid and unreasonable season (I say this as I type with the lights on and the rain hammering down). Phack it. August is supposed to be a lovely month. Is it bollards. DD

stickywicket

Tilly, you are a lovely, kind-hearted, warm, thoughtful (Shut up, I haven’t finished yet!), generous, sympathetic, empathetic person. The arthritis may do its worst but it can’t change that. The world has plenty of strong, athletic, perfectly-formed ar$ehole$ and it really doesn’t need any more. There’s only one Tillytop and, as you can see from all the comments on this thread, the world is in dire need of a few more.

If you have just one or two people in your life who understand or even just want to understand and try to understand the reality of your life, that’s all you need. Tell the rest what they want to know when they want to know it, tell them straight, kindly and briefly and apologise for nothing.

It is very hard for others, however well-intentioned to understand this disease. Even we, who have it, struggle. But we’re not unique. How much do we arthritics understand about day-to-day life with MS, MD, autism, Motor Neuron Disease or a brain tumour? I’ve known people with all of these and I’m sure I’ve asked some idiotic, insensitive questions in my time.

You are who you are, Tilly, and believe me that’s a very good person to be. Arthritis is only a bit of you. It’s a noisy, demanding bit but you are much more than it. It may modify who you are but it doesn’t define you. Hang on in there. It will get easier.

hileena111

Hi
I think it was in this thread that i mentioned that I had cried today as well......as DD says....weather has a lot to do with it.....It is pouring down here.......summer???? what summer???
Although which is better for us? summer when we cant do the things we think we should be able to or winter when the cold hurts our poor old bones No pleaseing us {or me anyway}

Love
Hileena

julie47

Morning tillytop

Just to say I am still thinking of you

I hope you feel much better today .

Love & Hugs ((((((()))))))

Juliepf x

suzygirl

Morning Tilly, hope today is a slightly better day for you.

As for summer, well, what can I say???? :shock: X factor starts tomorrow which means autumn is here What a barmy country we live in. :roll:

dreamdaisy

Hi tilly, I hope all is well, I am thinking of you. DD

stickywicket

Evening Tilly. Just stopping by to say hello. Hope your day's been as good as possible.

tillytop

Thank you, thank you, thank you all for your kind, wise words. Once again I am overwhelmed by all your support and I can’t tell you how much it helps.

Yesterday was a truly dreadful day. I went completely to pieces at my Mum and Dad’s and really frightened myself. But it led to a good, honest conversation with them and later with my wonderful husband when, for the first time I told him everything about how bad I was feeling “head-wise”. I had felt I couldn’t tell him the whole truth before because I didn’t want to burden him and give him reason to worry about me more than he already does but I think we were both glad that we had had the discussion. When I said to him that I just didn’t understand why, having coped relatively well with the RA and associated nonsense for getting on for 16 years, I had fallen apart now, he said that, from his point of view, it was not surprising because, during that time, he has never seen me so unwell. Of course that set me off howling again because I think when it’s you dealing with it day after day and year after year, you just don’t realise sometimes how bad things have got.

Today, however, has been a much better day. I have had a better day physically which, naturally, has meant I felt brighter.

Thanks again peeps. Onwards and upwards....

Love Tilly xxx

theresa4

Glad to hear youve had alittle improvement Tilly hopefully youve set a trend now and will continue going up at least for a while xx

Sending you some hugs for a boost ((((()))))