Self pity mode

Everyday living
1

Could somebody give me a kick up the backside please? I seem to be falling into a deep cavern of self pity. I don’t feel that I have anyone I can talk to as I don’t want to upset them (bore them to death more like). I’ve been struggling to sleep well, spasms in legs waking me up and taking ages to stop. I’m pretty sure that’s one reason why I’m upset. I’ve tried baclofen but it makes me feel spaced during the day.

I’ve been struggling to chat well recently. I have about an hours conversation in me with people I’ve not seen in a while and then I’m spent. I struggle to think of words that I want to say and my husband has now started filling in the ‘blanks’ for me which makes me feel like I’ve got dementia (please don’t anyone be offended).

ive been married 15 years and conversation with my hubby is now pretty limited, mostly talking about our kids and not much more than that. I just don’t seem to have any conversation to give? There are support groups around and I attend one which is pleasant enough but I can’t quite accept that I’m one of them and not a normal healthy person anymore. I visited my aunts recently, she commented that she knows someone with ME and she thought she was no way as poorly as I am. Am I that bad? I still walk, I swim well, how does it come across that im so ‘poorly’. We are going on holiday soon and there are nine of us going so we are taking two cars. It’s a four hour drive and most of the time I feel like I could drive half of it but no one else in my family think I can, am I that bad!? It’s like I’ve been shelved.

2

Sometimes a kick up the backside is not what you need, it’s empathy rather than any condescending sympathy. You don’t need ‘oh you poor thing, you’re so ill’, more ‘yes it’s crap, now what can we do to help?’

If you’re not sleeping well and Baclofen doesn’t work so well for you, try something different. Cloneazepam helps me at night. I was having trouble going to sleep, dosing myself up with Baclofen, then waking up in the night with spasms. And sleeping poorly really doesn’t help your cognitive function.

People filling in the blanks is one of the most irritating things imaginable. Sometimes I take a while to finish a sentence because I can’t think of a word. If my (normally lovely) OH tries to finish my sentence I find it utterly infuriating and find myself snapping ‘wait for me to finish!’ I suspect it’s frustrating for him too. But that doesn’t stop it getting on my nerves.

And honestly, who wants to accept disability? Of course you’re not one of ‘them’. Even someone quite disabled (like me) doesn’t want to accept that I’m one of ‘them’. I’m not, I’m me. Even though I can walk, use the loo, finish dressing myself, do much of anything. I still don’t necessarily want to chat to people with whom all I have in common is disability. (And that’s in spite of the good friends I’ve met on here, without our shared disability, we’d probably never have met!)

So, instead of a kick, I’m just offering some shared irritation and fellow feeling.

Sue

3

Hi,

Being compared with other “poorly” people isn’t the slightest bit helpful. Earlier this year my step-daughter said that she had a friend with MS and implied that this was all she needed to understand what I struggle with. She doesn’t even know there are different types of MS. There’s nothing I can do about her so I leave her to her own little bubble.

Many people can’t understand MS and prefer to wrap the problem in cotton wool hoping it goes away. I understand how this can lead to low self esteem and I make an effort to try as wide a range of activities as I can to avoid feeling socially and emotionally isolated.

I don’t know what you do well or what your interests are but I suggest you concentrate more on what you can achieve and not bother with what other people think.

Best wishes,

Anthony

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Can’t walk etc…

5

the only person who can give you a boot up the backside is yourself! you must do something that surprises your family (perhaps not hang-gliding!)but something that will make them think she’s not as disabled as we think. And you must ask yourself do you give people the impression that you like being treated like someone who is ‘poorly.’

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Hi, I sometimes think other people feel they are shielding us or protecting us, when in actual fact we still can and want to do certain things.

With you not making much conversation with people, those who know you, inadvertently take this as you being too ill…even to talk…were you a talker before?

I think you need to be open with them, when they finish your words for you…just say hang on, give me a minute please, Im not finshed speaking `…or something like that.

When people do things for me without being asked, they are just trying to help. But I jump in with, I can do it thanks.....Ill let you know if I need help`…

pollsx

7

hiya

i find thinking and talking absolutely exhausting. kids often finish my sentence for me but i am glad! adults leave me to struggle on so i find it much easier just to keep my thoughts to myself (not close family-they have got used to me!)

sometimes we are our own worst enemies eh?! tell those close to you what u want-it doesnt concern joe bloggs.

ellie

8

Hi Sue,

I hear your frustration and am sorry I don’t have answers for you. I so wish I did. Everything seems and feels worse when you don’t sleep well. I say this from personal experience. Not sleeping well is a part of my MS that causes a lot of disruption in my life. I can’t think through problems to find easy solutions (or not so easy solutions), and a life already complicated by the hardships of MS seems ten times worse without sleep. I can think of many ‘solutions’ that would make life easier when I haven’t slept well, but they involve money which I don’t have thanks to MS. I like the fact that you have found yourself an MS support group, and although it sounds as though you have a loving well meaning family, it sounds like they need practise in listening skills. I don’t think a kick in your back side is at all what’s called for, my dear. I think it is a hug, and I’m wishing I were there to give it to you.

Janet

9

Thank you all so much for your lovely kind words. I feel like I’ve been understood and gently hugged (thanks Janet) I’m meeting the group tomorrow and I’m going to be mentally hugging all of them as I know we could all do with one now and then. Fingers crossed for a better nights sleep everyone. I’ll be researching Cloneazepam (thanks sue). I’ll try to chat about it to my hubby xxx

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Something that many of us find helpful for cramps and spasms is Magnesium.

Get it from Sainsburys, Holland & Barratt etc., it’s a widely available supplement.

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Thanks, that sounds like an easy try, I’ll pick some up tomorrow xx

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Ruddy maudlin, that’s what I was at the weekend. Everyone else at a birthday party and I was having a pity party because I am going somewhere next Saturday and knew that I wouldn’t manage two Saturdays out. Blah.

Cried at Black Hawk Down, read two books, spent Saturday in the garden in my pants, got washed eventually, my stars were saying ‘Don’t be a bitch Pam’ in not uncertain terms, so I made a conscious effort to remove the black self-loathing mood and cleaned the house, felt a bit better. Then went in the garden in the dark to just sit and look at the stars. Then I did some mindfulness colouring which always clears my head of rubbish.

Woke up Sunday with feet that were really not working so stuck them in the bath, rubbed them till they woke up a bit then cooked some pure, fresh food. Mood gone now. It is horrid, it just comes out of nowhere. I think when the moods come it is sometimes a cummulation of many factors and one thing just sets it off. Mine was due to everyone I know doing family things during the summer and everyone else celebrating things. Then I thought, shut up you dopey beggar, you are not in a war torn country, everyone is well, just bloody shut up! So, that was it, last sniff into the tissues and pulling my flipping socks up.

Today to celebrate my much more Christian mood, I am sending yellow crocosmia bulbs to a lady on a gardening forum, which is the other thing that keeps me sane. She has just said she is sending me cornflower seeds, so not bad after all. And, I am having a cake.

Waybags, if you have the internet, stay on this forum but also open your world up. Google links, funny things, I watch the most rudest American comedy to cheer me up, I have an enormous music collection, I go on imdb to look at films, actors, musicians etc. Netflix keeps me going for the days when I can’t do much, I watch subtitled films just to see what the country and language are like. I go to colouring on a Monday a the library and story time, I do lots of daft things that are just for me. It’s not the same, it’s still me. I would set time out just for yourself to watch something funny at 2 every day or something like that. Make a start, these moods are terrible, we have to counteract them, I certainly will not let them win!!

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You need an up-do! Of course, summer holidays nearly over, everything will be cheap soon, if you can’t go shopping, just order. Even if it is something pretty new top, hair? New sandals which can be kept for next year waiting for sunny days, a pretty bracelet (I am not dressed or going out anywhere without my three ankle bracelets, I would rather go out without pants). Doesn’t need to cost a fortune, get someone to come in and do your nails (says the lady with black gardening hands), a little bit goes a long way. What makes me feel good is black bin bags - full of tat I don’t need going down the charity shop, ready for cheap pretty new stuff to hang off those empty hangers. My friend says my house is like a cell, if I don’t need it or use it or if it isn’t lovely, I’m not keeping it. What do you think? You need to tell everyone you are facing the wall and need their help but not leave them feeling desperate about it, you need them to help with the solution.

I would certainly be clear about the travelling in the car. I tell everyone if they want me to go out or visit, I have to pee every hour in fields a lot of the time, so take it or leave it, it is not a life-style choice it is a necessity. No good getting there feeling horrid, just be clear what you need then if you need day one to rest after you get there so you can enjoy the rest of the time, tell them. New rules needed. Communication, my family say they are not mind readers so I give them the gory details of everything now if they ask, as they cringe ha ha. Tell them, I love you all but I want a nice holiday, I want you to have a nice holiday, so this is what is needed for me to achieve all of this. It will be fun, holiday with loads of people, challenging and wonderful. I hope you will be wearing all new lovely clothes?

ps I shake like I’m in recovery most of the time and I don’t care if that makes me look or feel better or worse than anyone else. All I know is that my local coffee shop see me coming and shout ‘We’ll bring it over’, I can’t feel change when paying for something so I just have to put the money in my palm and say ‘Take what you need’ still don’t care whether this makes me better or worse than Mrs Blogs down the road.

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14

Waybags,

self pity (in small doses) is fine. It is normal too as well as comparing how we are; with other people or with how we were. As for having sentances finished for us - this can be really annoying. Even though I know this I understand the reflex (I have caught myself doing it to others! When people offer me help that I don’t want I Thank them and explain that even though I need the help I would prefer to struggle and enjoy the satisfaction of a small victory or cope with the defeat.

I can be too stubborn sometimes when I refuse help that I really do need. I then have to suck it up and politely ask for help. I have learned that provided I do it politely and with a smile, no one (as yet) has taken offence.

For me visiting this forum site give me access to others experience / wisdom / humour, understanding and empathy.

Hope you feel more positive soon

Mick

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15

Not getting enough sleep can really muck up your rationality but you can be justified in having a pity party now and again.

I can sleep for hours between getting up for the loo and sorting out cramps and still feel tired.

Today I went for an eye test. The optician was just yards from the car park and thought I could manage with just my crutch. How wrong was i? I suffer from footdrop and my foot would not lift off the ground and kept getting caught in cracks on the road.

By the time I got back to the car I was exhausted and had a good old cry.

Hubby did say to take the wheelchair but I always think I know best.

I have been referred for a fes, and I’m really hoping it work out.

Mags xx

16

A Pity Party! Hah, love that. Waybags, I use the magnesium spray from Holland Barrett. I rub it on the soles of my feet and my knees at night. No spasms and twitching for me now.

Oh Mags, I can identify with that. Lunch out on Sunday involved negotiating a fairly steep incline on a ramp to the restaurant. Parked next to it, I decide my rollator would be adequate. Feeling conspicuous as I shuffled in the doors, through the crowded restaurant, I almost fell into the seat. The return journey was ten times worse! Right foot would not clear the carpeted floor and I almost stumbled three times going back to the car. Should have used the w/chair. I too (eventually) got in the car and cried.

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FES is definitely a good thing for foot drop. And will help. (Think positively and all that!) the less tears the better. Just keep up the core and the upper leg strength, then the foot drop will be a walk in the park. On a nice sunny day with an ice cream at the end of it.

Sue

18

Poppy,

My lovely Pops, I really do feel for you. You’ve gone through such a tough time. You’re diagnosis to disabled time has been so short. And the sooner you find you can live with the bastard wheelchair taking you places, the better. Because struggling with walking is hard, but worth it. But when you’re going out, fighting with hills just takes some of the shine off things.

I am so sorry you’ve had to deal with all this crap in your life. And you’ve dealt with it so well, it’s no wonder that you sometimes end up in tears.

Sue

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Aw Sue. Thank you for that. I know some of you lovely people are so much more less abled than myself and are accepting and still upbeat with this crappy ms . I really shouldn’t weep and wail! I’m just off to send you a message. x

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Oh Poppy, I really feel it. Carpets are the devils work. Hate, hate,hate them.

My mother in law,s house has them all over the place. I absolutely dread going as I inevitable trip over and I make her a nervous wreck. She just can’t handle it.

Mags xx