A Good Place Options

[Dianni]

Hi folks

I always seem to post threads when I'm fed up and sulky so I thought I'd post something more positive. (It will still probably end up being a long rambling essay though )


I got my dx in April 09. I'd only been unwell for a couple of months before investigations started and from the first neuro appt to the dx took exactly 4 months (to the day!)

I can't say it was a shock as I'd sort of guessed by that time that I was an MSer and to be honest, I think I was a bit relieved. It could have been something far worse!

By the time I got the dx I was struggling to walk any distance and had terrible fatigue (along with all the other aches, pains twinges and tremors!) and was told I had chronic onset primary progressive MS.

Like everyone else who gets a dx, I had no idea what to expect, but what I didn't expect was to be using a w/chair and unable to drive etc within 12 months. I think I shut down mentally to a great extent. MS became the over riding item in my life. I no longer saw myself as a wife, mum, daughter, friend, woman. I was, I think, in my own head, a disabled woman with little to look forward to other than deteriorating mobility and increased dependence. i felt as though all my choices had been taken away from me. I sold all my high heels, resigned my pretty clothes to the attic, gave away my flashy roomy bags and shared the vast majority of my (mainly costume) jewellery between the girls. I no longer wore makeup, had my hair cut short (though this was definately a good move!) and basically resorted to living in tracky bottoms, baggy T shirts and, when I had to go out (which I did as little as possible) 'dressed up' in jeans and a slightly newer T shirt and trainers.

I had to ask if I wanted to go anywhere, needed food preping, cooking and often cutting, I needed help to get to the bathroom and bed and as such had to wait for whoever was available to be ready to help me.

I found (and still do) it very hard to ask for help and to admit I needed it. I was often, I think, overly grateful when I got help, be it from family, friends or professionals.

So what's changed? Honestly, I'm not sure. All I know is that I've noticed over the last couple of months I've started buying new clothes. I've hit ebay big time and got jewellery, shoes, makeup, bags (and loads of toys for the grandsons ) Not only that, but I'm wearing them. (Not the toys. I find it hard to get the right ones to co-ordinate with my eyeshadow ).

I went to see my therapist yesterday. As we (well ok I) were talking, I found myself smiling. I was telling her about my social life! I suddenly realised I go out at least once every week with friends. I've never had time before. My life has always been full with work and kids and running the house. I have had very little in common with people my own age. Most of them have school age children and/or worked so were busier than me. Finding time to see friends was not a priority for any of us and we kept in touch by email and phone.

I think I am finally coming out of the grief stage. OK my life plan has changed. I wont work again, but then I don't want to either and thankfully don't need to. I wont be going on exotic holidays, but then I've always preferred to stay home. I won't walk hand in hand with my hubby through the woods, but I can (when I learn to control it!) drive my electric w/chair with one hand and hold my hubby's hand with the other. I still need help with personal cares and meals and I wont ever drive again but I can live with this.

I'm still and hopefully always will be, rubbish at admitting I need help and reluctant to ask for it, but I now ask with more conviction, and assertiviness and guess what, I get the help I need. I no longer feel beholding to who ever helps but have learnt to say a heartfelt and sincere, but 'normal' thank you.

I still get frustrated and cross and generally pissed off, but do you know, that's OK. I'd be like that for different but still valid reasons, even without MS.
It's perfectly OK not to be happy about having MS. It's OK to be angry and hate it. The trick is (I think) to accept that it's OK to feel like this and not feel guilty about it.

I am definately in a much happier place than I've been for months. I've turned a corner. I now see myself as a woman who happens to be dealt a card with MS emblazened on it. It doesn't say anything about having to wear baggy clothes (unless I CHOSE to). It doesn't say I can no longer be a mum, wife, daughter, friend. All it says is you have MS. This is not a choice, but everything else in your life remains unwritten, just as it was before you got this card.

I think the top and bottom of my new happier perspective, is that I have suddenly realised I do have choices. I can chose what to wear, where to go, when to go. I might not have a choice about how many spoons I have each particular day. I do have a choice though as to how I spend those spoons. I don't get to pick which bit of me hurts or aches or twitches, but I do have a choice whether to put up with it or take meds, give in to it or push through it as far as I can.

You see you might not have noticed but I am a control freak! Not towards others, but as far as I am concerned personally and I felt as though all my control over my life was being or had been taken away. I think I've got a sense of regaining at least some of that control.

So ther you go. Finally a more positive post from me. I have to say that it's the support and friendship, advice, encouragement and laughter provided by the members of this board, that have helped me to ge where I am. I seriously doubt I'd have been writing this without it! So I owe you all a really big none syncopathic THANK YOU!


Sorry if I've gone on (well OK I'll rephrase that!) Sorry for going on!

Hugs
Di
xxx

[Christina]

Di,

I always enjoy reading your posts because you always seem to hit the nail right on the head! I can see so much of my own feelings in what you say and I'm truly happy that you're getting to a better place now. You're right, there is a long grief process to be gone through. I was diagnosed about the same time as you I think and I still have days when I think life's not fair. I hate needing help with things - always was very independent - always the one helping others and not the other way round. It's a hard pill to swallow when you need help yourself and the prospect of that increasing as time goes on. You always put yourself out for others on the board, give lots of your time and thought to people's problems.

So, good on you Di - you certainly deserve to be feeling better about yourself and getting back to the 'old' you. It's easy to lose yourself in this frustrating disease - sounds like you're getting back on track hun.

Chris x

[Stumbler]

Di,

I think your "awakening" will be so useful to anyone, who has just been dealt this card!

I should imagine it was quite therapeutic for you to write those words.

Thanx for sharing

[happyandy]

Why did you not just say you had a young bit on the side ....

Andy

[Christina]

Andy - you little monkey!!

Chris x

[Hezza]

What a beautiful post Di. Thank you and long may you stay in your good place

[Tania B]

Di,

I'm happy for you. Long may you run!

Tania x

[Lindyloo]

lindyxxxx

[brainless]

you see, Di, I told you that you were going to be an inspiration to others!

I love your ramblings and I have no doubt this one has helped somebody today.

You certainly have made me smile!

[elma]

Di,

What a lovely post. You certainly made my day.
I was feeling frustrated that I couldn't do what I
wanted to cos I had no energy and was feeling
sorry for myself and like no-one was there to care.

Reading your post tonight made me feel so much
better.

Thank you so much,

Elma.

[lisajo]

Di


What can I say you are a woman after my own heart,an inspiration to us all.

This morning I looked in the mirror and thought of employing a plasterer then decided that I really should open my make up bag...moths flying ... not enough heavy duty products there so I googled B&Q only joking..
I actually opened up a new world by googling make up what do you know I'm now ordering the filla at half the price!!
Also recently haven't been my funky self as far as dressing up etc so hit ASOS.com and ordered myself some new outfits.
I'm going away next week to a luxury lodge with hottub, alone,child free and decided to pamper myself with smoothie shower gels and other nonsense.
It feels good though and amazing how you can transform yourself from your sofa.

[Dianni]

Awww

Thanks everyone. I'm so pleased to hear my ramblings help on some level.

Stumbler, you are right! I have always been a writer (even had some stuff published). I keep a journal which suffers far more from my ramblings than I'd ever dream of exposing you all to

Lisa, I am a tight Yorkshire lass, so all my shopping is done on ebay! I never buy anything until I've had a look to see if it's available on there first at a bargain price!

I should have put a caveat at the bottom of the post. As I forgot, I'll do it here:-

Please beaware that all of the above is subject to change without prior warning. It should be noted that emotions can go down as well as up and while every effort will be made to maintain the current situation, no guarantee can be provided. As such, readers may be subjected to further long rambling posts submitted by the author of original post where said author is miserable, depressed, angry and generally pissed off.

Hugs
Di
xxx

[brainless]

bring it on!!!!!!!!!! x

[happyandy]

Di

That last bit was pure class. You should think about a career in writing ..

Andy

[lisajo]

Go Di

[jeni]

Hi Di,

I just had to say what a Beautiful Letter to Us All.

I was not going to reply as I have not been Dx'd as yet and felt almost like an intruder (not your intention I am sure).

But some of your feeling that you have experienced,are what I am feeling at this moment in time.

Take Care.

Love Jeni xx

[Dianni]

Hi all

Andy all I can say

Jeni my posts are meant for one and all, regardless of dx status.

I am so pleased that so many of you have been able to relate to my ramblings. It makes it so much easier to deal with when I realise that I'm not the only one going through these emotions, dealing with symptoms and all that life (MS or none MS) throws at me.

Thanks for all your lovely replies and words of encouragement.

Hugs
Di
xxx

[kooky]

Ah Di....you're a star!.....I recognised myself in your 'ramblings'.....long may they continue. Many hugs.xxxxxxx