Last reply 6 years ago
A Rant

Ok, I’m relatively new here and have been diagnosed officially now for about 4 weeks. I’m trying desperately hard to remain positive about things and I think so far, I’ve managed to achieve a healthy outlook on the whole process and my possible future.

BUT…and here’s my first ‘pet peeve’ now I’m officially an MSer.

When I say that I’m exhausted, but I continue to drag myself around the house…doing dishes, tidying or seeing to my daughter, it’s because I HAVE to. Despite the fact that I feel that any moment I could just lie on the floor and stay there. I feel as though my wobbly legs will just finally have enough and give it up as a bad job at any moment. And then someone will say to me “Yeah, I’m tired as well.”

Is it just me?

I’m not saying that I feel worse than anyone else. And I’m not saying that my symptoms are worse than anyone else. But why do we, as human beings, (And I guess I can put myself in this category sometimes as well) when someone tells us they’re feeling down, or tired or ill…we always have to go one better and say “Yeah, me too…I’m exhausted!”

Grrrrr – Sometimes I just want to moan, and get a bit of sympathy. Is that terrible?! Or self indulgent? I can’t be positive ALL the time. That in itself is exhausting!

Sorry, rant over peeps! :p

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stumbler
6 years ago

Rachel, you have an unwanted lodger in your body and you can’t evict them. So, the only logical way forward is to live together in the best harmony that you can achieve.
Now, you need to understand that your lodger will have a bit of a hissy-fit, if you allow anything to stress you out. So, please try and stay cool.
Also, your lodger doesn’t like to be ignored, whilst you try and behave like nothing’s wrong and you tackle all your normal chores. In this case, your lodger will once again seek retribution and get their own back on you.
You have to “listen” to your body – when your body says I’m tired, you need to rest.
So, yes, stay positive, but manage your condition and then you can co-reside.
Hope this helps.
🙂


chueykooh
6 years ago

I get the same way sometimes, I do try to realize though that before I had MS, if someone who had it told how bad the fatigue and other symptoms were, I really would not have understood not going through it myself. That helps me sometimes, sometimes not as much 🙂


boodle06
6 years ago

Hi rachela, I think your perfectly entitled to a rant! I think your doing really well coping with your recent diagnosis, and I appreciate the good positive things you have posted to me on things. So definitely rant away and stay strong xxx


rachela
6 years ago

I know Stumbler.

I saw the local MS Nurse a while back who is lovely, she explained that I really need to learn to pace myself. I’m bad for feeling good, upbeat and reasonably energetic…and doing LOTS. Then crashing hard for the next 3 days. It’s easier said than done though right?

I mean, when I’m feeling good I want to do things. I feel so guilty about the days when I feel like sh!te and don’t get things done, that I want to make up for it. Then I end up doing exactly the same thing. Will I ever learn?

And yes, what you’ve said does help. And you Chueykooh. It’s so good to have others I can share with and know that, despite the support I get from my family, I can talk to people who ‘know’ what I’m feeling, thinking and going through.

Thanks guys x


rachela
6 years ago

Thanks Boodle. It sounds daft but…knowing that other people are going through much worse than me makes me even more determined to stay positive. I get comfort from comforting other people…if that makes sense?


stumbler
6 years ago

Stay positive, but also be kind to yourself.


lightningduck
6 years ago

I know what you mean, @rachela. On the one hand my symptoms are not that bad compared to most but on the other hand I do get fatigued and it does impact my day such that it’s hard to really ever have what I would consider a ‘normal’ day anymore

I don’t want to complain because I know many have it much worse, but some days it’s still rough and I just want to say “you don’t understand, it’s more than you think”


Anonymous
6 years ago

Good rant, girl. You said it so I didn’t have to. Yeah, there are those days when you think, “I have to walk over there to brush my teeth? Why, oh why, won’t it just float over to me?”


f3ng5hu1
6 years ago

Hi Rachela. Welcome to shift.

You’ll have good days too, always keep that in mind. Relapses, at least in the early days, blow over. or may take days or a month or so but they will. You’ll experienced a few minor on/off as well quite likely, but as stumbler said, you can adjust and cope. It’s amazing how much the body can adapt to things even ms and I know it’s a tough one to manage sometimes but as I always say to folk, a day at a time, don’t worry about the future too much as it’ll only wear you down mentally and physically. Keep a PMA (positive mental attitude). Even so, I need to vent myself sometimes if things kick off, we all do lol, saying that, you’ve found a good place here at shift, peeps always on hand to listen and not judge and the best thing about it is we are people who HAVE the same condition as you mostly (some are still being dx’d) so we know the kinds of things your experiencing to a lesser or greater degree. Ms is so varied, like the weather at sea, you can sometimes not see the storm riding in but it blows over, you’ll be fine.


serankin
6 years ago

I have been getting a little miffed about people not understanding how I feel and like you I have only recently been diagnosed. The combination of the chronic illness diagnosis along with the complete change in the way you feel and perform physically is exceedingly hard to cope with. Unfortunately people cannot understand how you are actually feeling, all they can do is sympathise (or if they are ignorant they may well just think that you are making it up!). Interestingly, I have found that for some people who are genuinely trying hard to sympathise with you, they try to relate your symptoms to what they have experienced and hence come out with statements like, “I have had (or have) that”, even when it is not even close to what you are experiencing. So maybe they are not trying to go one better than you with symptoms, they can only try to relate.

The one I hate is the “Oh I know someone with MS and they are doing this and that – they are not so bad”. Grrr! It is different for everybody, some are completely buggered up more than others (EDSS scale)!

Another one I have had is someone getting confused between ME and MS, although I am sure ME is devastating, they are not (as far as I know) getting brain damage and damage to their spinal cord. If you want to get peoples attention, I have found that mentioning brain damage or spinal cord injury usually gets the response, “Oh I did not realise that”, and usually results in more genuine sympathy (or a realisation that they have never experienced anything like brain damage or spinal cord injury so cannot relate to you, which leaves them in a state of believing anything you say!).


lightningduck
6 years ago

“they may well just think that you are making it up”

This one always confuses me…how can you “make up” lesions on your CNS that show up in an MRI that a doctor can point to?


Anonymous
6 years ago

@rachela – right there with you on this topic.
I do the same. I can’t relax if my house is messy or there are things that need to be picked up. So I typically force myself to do work when I am utterly exhausted. Drives my partner up a wall.
I also completely understand where you are coming from on the subject of people “one-upping” you or complaining about their fatigue compared to yours. I have a similar constant annoyance with my father right now. He pretty much continues the statement that I’m not sick. I’m not as bad as I make it out to be. And its probably either just in my head or I’m making it up. (I may not have a dx yet…but all you have to do is watch me for a day to see something is quite wrong) So when I say I’m so fatigued I literally can’t leave the house or get out of bed….he goes on about how he works 60 hours a week AND does school AND spends all of his free time doing homework and only gets a few hours of sleep a night….and proceeds to tell me “you just wait until you’re in school again – then you will know real exhaustion’.

Makes me think “gods I wish I had the energy to do what you do” and then it makes me want to smack him.


Anonymous
6 years ago

That was my little rant apparently…
What I meant to say was this:

Everyone’s experience is different and just because you aren’t as bad as some doesn’t negate what your feeling or experiencing. Especially with this disease. Listen to your body and allow yourself the rest and care you deserve. Its very important to take care of yourself – especially when you have MS. And part of taking care of yourself is having a positive outlook and attitude. It can make the world of difference between suffering from MS and living with MS.


Anonymous
6 years ago

Very good rant and one that needs to be expressed every now and again. I too, had my rant just yesterday. I try and stay upbeat and positive most of the time and I am pretty good at finding the humour in situations rather than let them get me down BUT, one thing that frustrates the bejeebers out of me is the fact that those without MS have no idea what it is like having MS (which to be fair, isn’t their fault) however, I don’t know about you, but I seem to have a lot of people come into my life that believe they have a “cure” for me. They tell me that they know someone that had the same symptoms I have and this or that vitamin or health powder or diet “cured” them so I MUST try it!!!! I do realise that they are saying and doing this out of actual love or concern for me and want me to NOT have these symptoms but it actually just irks me because I DO NOT have what this or that person had that was instantly cured by drinking some magic stamina builder and my symptoms are NOTHING like those that are a bit tired, sluggish, have aches and pains and just don’t have the get up and go they use to…. I HAVE MS!!!!! So, not to try and steal or compete with your thunder ha ha… but now my rant is over too he he….. You are not alone so by all means grizzle every now and again… I think it is healthy 🙂


rachela
6 years ago

Thanks everyone! you guys are awesome.

It feels great to be able to share things with you.

I’m feeling even more guilty this morning for moaning…my partner let me lie in and has just brought me breakfast in bed! Think he might have read my rant?! LOL


reddivine
6 years ago

First off @rachela, listen to your body. Its screaming STOP! Stumbler is right, you do need to pace yrself. don’t try and be superwoman. Have chat with nearest and dearest and ASK for help.
You may well HAVE to have nap in middle of day. I do. And when I tried pushing thru it, when kids were younger, I would end up unable to finish sentences. Better yr family has you 100%, 80% of the time than 80% of you, 100 % of the time. Change your priorities. Lower your standards. Does it really matter if I don’t do cleaning NOW? I pay a cleaner and a gardener now cuz I wd not want to live in shit. But some stuff….let it go.


Anonymous
6 years ago

Sometimes i just cannot be bothered. It is difficult to drag your ass in and out of bed.


cameron
6 years ago

It’s so interesting to read these posts. I find there are generational differences in people’s understanding. I have noticed older people often speak in hushed tones about MS because the ‘sufferer’ is completely written off or seen as an object of charity. (Have to say this seems to be the attitude of our local MS society, whom I saw last year fundraising outside Marks and Spencer’s with their row of wheelchairs and their begging bowls). Younger people I have found much more open and less judgmental. But I also think that many people are just thick. They’ll never ‘get it’, no matter how you try and explain. (This makes the ones who do worth their weight in gold!!). Favourite saying of a friend of mine: never overestimate the intelligence of the electorate’.


alison
6 years ago

I can’t remember where I got this advice (probably on here) but it goes like this: treat your MS body like a car, you start off with a full tank of petrol and you can choose to make lots of small trips or a few bigger trips, but be aware that the petrol will run out at the end of the day. It helps me plan & not take on too much, even though I still think I’m Wonderwoman. I try & schedule a rest day after a big event, and try not to drive too far (in my real car) without a rest. Hope it helps X


lightningduck
6 years ago

Anonymous
6 years ago

The Spoon Theory is wonderful!!


Anonymous
6 years ago

Yes the Spoon Theory is great… I’m a “spoonie” 🙂 I had written a post on my blog about having $10.00 a day (energy dollars) to spend and having to decide how to spend them. After another blogger read my blog she sent me the link to the Spoon Theory… it has quite a following!


lightningduck
6 years ago

My wife has read it as well…sometimes I just need to say “I’m out of spoons” or something like that and she knows what I mean


rachela
6 years ago

Thank you so much for posting ‘The Spoon Theory’!! Honestly, that’s the best analogy I’ve read for what my day to day life is like.

We have my mother in law visiting at the moment. Stressful at the best of times…but today she wanted to go for a walk. I’m at work tomorrow so decided to stay at home. Hard decision to make because I don’t want to seen anti social. But if I use a ‘spoon’ going for a walk today…I won’t be fit for work tomorrow. Simple as that.


alison
6 years ago

Thanks @lightningduck – it’s really hard to limit yourself when you’re used to being strong & independent, but you have to obey the spoons! X

It’s very difficult to express yourself sometimes and not sound like a fake to others…partners, children etc. The spoon theory is really good, so is the petrol/car analogy. I still get ‘don’t use your MS as an excuse’ sometimes…..hate that!!
I’ve found though over the years nobody seems to get it unless you experience it. But like chueykooh said, until i had MS i didn’t get it!!


lightningduck
6 years ago

@alison – I know what you mean. My hobbies include Martial Arts (with a strong dose of physical exercise to boost that) as well as indoor rock-climbing and hiking and dancing. I’m still putting back together what I can do and what I can’t

@stallionicchampionic – I do understand the “Don’t use MS as an excuse” because sometimes it’s tempting to do so. Sometimes there are things I can’t do and sometimes there are things I don’t want to do and sometimes it can be tempting to use MS as an excuse why I can’t do something when really it’s just that I don’t want to


hairstylst73
6 years ago

I have the spoon theory printed up on my fridge. I don’t think anyone has ever read the whole thing, but oh well. LOL. I am planning a new tattoo right now that will have a spoon in it somewhere. 🙂 and yes it’s true, unless you have MS it is hard to make a good comparison on fatigue. When I 1st got it I couldn’t sleep enough! My husband said to me ONCE (only once!LOL) “gee it must be nice to sleep all day” to which I replied “gee, it must be nice to not have an incurable disease” and the. I proceeded to give him an example of how severe the fatigue was. at 2:30am I shook him awake and said “get up! Get the kids to school.. Clean the house… Start your day!” his reply— “it is 2 in the morning I am sleeping!” me–“nope GEt UP!” —and of course he didn’t but that’s how I explained to him how tired I was during the day.


crystal10
6 years ago

As a single mom I feel this frustration everyday it seems. I am alone and taking care of my daughter, my household, working and going to school…and most of the time I have to push myself to do it all. I logically understand that I need to pace myself and be more choosy in how I spread myself out throughout my day, but it is extremely hard because I am so used to doing everything and so used to having to take care of everything that I can’t seem to balance it quite yet. What frustrates me more than that is that no one around me really understands what I am going through…I look young and healthy so I think it is hard for others to really get that I basically feel like shit and I am still forcing as much as I can out of myself. I also have a high tolerance to pain so when I am in pain I don’t always ‘look’ like I am and can still often manage to function even if it’s less than normal for me. When I say I feel burnt out people usually chime in too…and I smile and nod, but I know they aren’t feeling what I am and they don’t get it…so I just keep on truckin’

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