Whilst I’m not a misery guts or down in the dumps I think one of the things m.s. has taken from me is the ability to feel absolutely carefree without a care in the world. Somehow like nasty background music the m.s. is always lurking.
(should add that I live in deepest Yorkshire)
Yes, I’ll go with that. I’ve been dxd two years now. My mobility has been badly effected. I no longer drive and need a chair for outside.
No matter what’s happening in my day/life, I find the MS takes precedence over it. It lurks there, in the background as you say. Sitting at a table enjoying a meal, I may find I’m struggling with my knife, or I’ll go to get up from a chair, and realise I might need a second or third go at it, to push myself up. Something as simple as staying at a B&B or restaurant now has to have careful consideration…is there a ground floor room, how accessible are the toilets? etc. etc.
Yep, those carefree days are gone.
Me too. Continence is a problem and getting up from chairs. I feel carefree when I’ve just had a pee and I’m sitting down and watching a DVD or YouTube. I love makeup blogs. I forget that I can’t just go shopping. I can imagine though. Reading in bed is a carefree pleasure.
My nature by default, is generally positive. I’m a glass half-full type of girl but MS seems to be doing its damnedest to change that! Like you say, everything I do now has to be considered, if it’s a ‘possible’ or not.
I miss the days when I just ‘Did’.
Like! (We need that button back)
Back in my ‘carefree days’, such an absence of concern caused me to fear that i had overlooked something! And so not carefree at all!!!
MS to me stands for My Shadow. It is there, everywhere; I wake up and do a system check of my faculties and extremities… I am apparently much more quiet and pensive these days, since my Dx.
However, i do not feel in the doldrums about it.
Whilst I harbour the same fears and dreads that i am sure any other person has (with MS Dx or not), there also comes an appreciation for all that i still have. And so whilst i tip toe around those things in life which might threaten a relapse, i also try to make the very most of the good cheer and happy times i am still afforded.
What else is there to do, if you wish to truly live, as opposed to merely exist?
I wish everyone the best of luck in maintaining their ‘stiff uppers’!
Innit da troof!
We can’t run , or even walk, away from this monster that dwells uninvited deep inside us, but we MUST find a way to accommodate it, or life is joyless, pointless and downright miserable 24/7.
Sure, we are prevented from doing things ad hoc, as we used to, but we can still find goodness and light in many things.
Hang on in there chums!
Pollsx
totally agree Poll - but do we ever feel really happy/carefree/relaxed or is the m.s. always lurking whether we like it or not.
Good points all. But I just read a couple of them (again) and thought, did I ever feel happy, carefree and relaxed? I know that once upon a time I had a job that at times made me really happy. Fulfilled maybe. But carefree and relaxed? Hmm. I don’t think I’m a carefree and relaxed kind of person.
In a funny way, I feel less care worn and probably more relaxed now than I did say 15-18 years ago, or even 10-12 years ago. I don’t have money worries, I’m very fortunate in that regard. And my OH does all the financial business of the house. My needs (financially anyway) are quite few. I don’t have to dress for work, the car is covered by Motability, we have enough to live on relatively comfortably. I don’t think we have massively expensive tastes or hobbies that cost a lot so we’re OK. I’m really very very lucky in that my husband is one of the nicest people you could meet and he looks after me.
Obviously I wish I were not disabled. I wish I were fit and healthy. Then I’d probably have more stress in my life because I’d have a job, and judging by the jobs I had before disability struck in a big way, they would be challenging and probably quite stressful. I would still be 50 years old and unaware of what health problems were ahead of me into middle and old age.
I feel fortunate that in the last year or so I’ve migrated onto ESA and am in the support group, and transferred to PIP and been granted enhanced rates for 10 years. So that’s a load off my mind.
But I suspect that once I accepted that I have a high level of disability and that I basically have no idea where that’s going, how bad it could get, I relaxed about it. I’m not a happy go lucky person by any means. A bit grumpy and moany essentially. But I reckon it’s got a lot to do with the type of person you are once you’re past the first uncertain few years of diagnosis. 20 years in I’m OK with it.
Sue
It’s always lurking, grinning, malevolant & destructive, but in times when we are enjoying what we’ve got, it’s like anything else we worry about, money, kids etc, these concerns are always there. Yes, the disabilities are still there, the horrible symptoms, the difficulties but, if there is the opportunity & on the occasions life can be enjoyed, I personally, as long as people don’t expect me to run marathons, can still enjoy what I’m doing,& the company I’m with even if it is for a short time. I get very frustrated, can’t go out on a whim but I can still have some sort of a life, takes a bit of effort, but I feel it’s worth it, would rather have had 1 day of happy, than a lifetime of letting MS taking everything away. Personally I think, only children are able to be truly carefree, as adults I don’t think that we can be totally, but we can be happy & to an extent relaxed, if only for a short time.
My biggest problem is cabin fever. I can still drive, but I find it stressful. The distance I can walk has decreased since I developed foot slap, and MS has been reducing my walking speed for years. (It’s now less than 1.5mph!) I’m tripping more often than I used to. I don’t fall, but I worry that one day I won’t be able to catch myself. All of this means that I don’t go out on my own. When I do go out, I push myself past my limits and have to spend the next few days recovering.
Do I ever feel carefree, happy and relaxed? Sometimes. For example, when we’re on holiday, be it a cruise or in our motorhome, I can feel happy and relaxed. It rarely happens at home because I’m surrounded by evidence of how little housework I’m capable of these days.
well krak, I doubt there are many folk about who dont have a disability, that feel their life is one long whoop of frivolity and joy!
We have longer to think about it…at least I do. And those I know who work, have such busy and stressful lives that I really dont envy them, despite their health and possible wealth!
Dont stress yourself about it Krak.
If we hadnt been struck down by this monster, can we know our lives would`ve been much better?
I dont think so, but we dont have a choice about it.
Dont sweat it hun!
pollsx
Well, i feel better mentally at least, for reading this thanks too all
i needed that!
Happy thoughts to all, julien
I do not think that I was ever ‘totally happy, carefree, relaxed’ pre-MS either. The things I worried about were just different ones, that’s all.
It is true that I didn’t know how lucky I was back then, but that surely applies to most people most of the time (including most of us now, I expect).
Alison
I used to be the “wherever I laid my hat” type of person but now everything needs planning.
But I feel that I can still be carefree, relaxed and independent. MS is a really difficult card game but I still see it as a game. My last trip up north (on my own) and subsequent sufferance may have reminded me of the power of the beast but I’m still waving two fingers at it.
I always feel that the responsibility that comes with maturity may also be a factor. My glass is three-quarters full though.
Steve
Do you mean going up north has messed with your MS? Appen it’s cos we’re known for being 3 overcoats colder!
And most the majority of us have fat to insulate us!
No offence!
Pollsx
Did wonder myself about the reference to (deepest Yorkshire)? &? not picking but what has that got to do with owt? Does where we live/ come from make a difference to our disposition? No disrespect meant, but you have seemed to imply Yorkshire has an underlying cause of your melancholy post? I personally think Yorkshire is stunning, me saying that coming from North Wales, surrounded by Snowdonia means Yorkshire is beautiful. York is really 1 of my most fav places in the world, seriously. A quick look around would tell anyone that. No offence meant, but an open eye is much needed. Tracey
Yes, I suppose I am.
I always have been.
More time for hobbies these days - and no housework.
So yes. I am okay.
Fay
I have less time to feed my griffin.
Yorkshire is, as everyone knows, the best place in the world. I assumed the reference was because those of us from Yorkshire a) are so proud of our origin that we mention it whenever we can, hence the saying ‘never ask if someone is from Yorkshire. If they are, they’ll tell you in the first five minutes anyway and if they’re not, you’ll only make them feel inadequate!’ and b) one of the things we are proud of is the superficial grumpiness with which we greet the world combined with a certain subtle sense of humour. So yes, it was a joke, I think 