Deluding ourselves and others?

Everyday living
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We have a vile disease which mucks up our lives, causes us massive problems on a personal and social level and in our work etc.

We live with the real prospect of our health deteriorating and over time we will have life-changing physical problems.

We may be periodically assessed (PIP etc) in a system totally inappropriate for pwms.

We may be (un?) fortunate enough to be given drugs which may or may not ‘work’ - drugs with potentially damaging side-effects.

We may see neuros/m s nurses - and then wonder why on earth we bother seeing them!

We are ‘encouraged’ to ‘come to terms’ our m.s. - to reach some state where we accept our lot.

Have we become conditioned to be mild, non-questioning, accepting, servile - conditioned to be happy with our lot?

Can we not be honest and be ourselves - should we not tell people who ask how we are feeling that we ‘are fine’ - should we tell them that we have a serious illness.

I am angry, upset etc about having m.s. and the resulting problems - why am I expected to put a happy all-singing all dancing front on things – and no, I don’t have a ‘sense of humour!’

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No one has any expectations of you here. Feel free to say it how it is, lean on us, you are not alone.

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I feel like this too krakowian. Pretty much every day. Sometimes there’s a chink of light and I’ll be grateful for what I’ve still got ie my wonderful husband who now does everything i no longer can. Driving, cooking, cleaning, laundry… but then I get scared and fear what will occur should anything happen to him. I tell myself I’m lucky to still have control over my bladder and bowel. Lucky?! I scold myself for griping sometimes. I tell myself it could be worse. I can still just about shuffle,slowly and painfully, indoors. I can still stand up and transfer to the wheelchair. I can get into bed, albeit in an undignified fashion, but I can manage. However, I won’t delude myself, or indeed, others. I’m a realist and tell it as it is. What does pee me off though is when people ask me how things are, then proceed to lecture me about, “there’s always someone worse off than you”. I SO have to bite my tongue and agree with them. They know it all. They don’t have ms. That may well be true, but I only care about how I am! How this debilitating condition has affected my life and the way I live and those around me. People say I’m still me but I don’t feel anything like the me before ms. She was lively, energetic, good humoured and spontaneous. She stood up proudly and walked purposely. She wore her clothes with panache, whether they were casual or classy. I miss her.

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I wouldn’t expect you to put on a ‘happy front’, but that’s probably because I have MS & understand how you’re feeling.

I think that when asked ‘how are you?’ by a friend, it’s best to temper your reply…depending on how well that person understands you & what’s wrong with you.

Giving a blow by blow, completely honest reply to the question might reduce the amount of people asking how you are in the future…some people might even feel embarassed.

Surely we have to ‘come to terms’ with our MS to a certain extent. I’m unhappy that I have this dreadful disease, I’m angry sometimes too, but eventually the point comes where I just have to get on with it! It’s not anyones fault, there’s nobody to blame & I think, lots of people trying to help!

Rosina

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That’s an excellent reply Val!

Rosina

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Most of us mortals go through life with the cheerful delusion that we aren’t going to die, don’t we? And that’s lucky for us and our mental well-being. Look at Philip Larkin: his deep and persistent timor mortis might have fed his wonderful poetry, but surely at a cost to his peace of mind. Sometimes a person can see too clearly for his own good. As for me, I like my nice delusions and prefer to keep them, thanks.

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Val. I don’t know how long you’ve been managing your ms, or how it has affected you even, but I have to say I hope I eventually reach the levels of acceptance you obviously have.

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I’m actually more on Krakowians level when it comes to MS. In my opinion it is a horrible disease. I see no reason why I should come to terms with it or accept it. Or tell people I’m ‘fine’, when I’m really not.

It has caused me to lose my career, my walking ability, my handwriting, my memory, my independence. And I valued all of these.

I understand the point of protecting the people I love from the day to day crap that I and many others worse off than me, have to live with. But I also see that by sharing my feelings, experiences and yes, at times utter despair is necessary. The people I love, and who love me, would rather we were able to be honest with each other. I am happy to share in their lives, the good and the bad. And I believe they are happy to share in mine.

I used to always go about being ‘fine thanks’, but no more. If my arms ache from leaning too heavily on my walker, for the 20 or so steps I manage to take in a day; or I’m fed up with spending up to 3 hours a day in the bathroom changing my stoma pouch; or I am feeling horrible because I can’t speak at the same time as doing anything else due to my cognitive deficits, then I will say so.

I continue to be ‘fine thanks’ to the people I don’t care about, the people who don’t know me and who I don’t know. But I’d rather be able to share my sheer annoyance about the problems MS has caused me than to have superficial friendships where I don’t ‘burden’ others with my anger about what MS has stolen from me.

Val is right that ‘being honest doesn’t have to be being miserable’, and I’m not. But I do need at times to vent my utter fury at the wrecking ball MS has taken to my life.

I know that I am lucky to be married to a truly good man, I am lucky in where I live and the fact that I don’t have severe money worries. I am lucky in my friends too, including the ones brought to me by this horrible disease through the lovely family on this forum.

I was bloody unlucky to be granted the ‘gift’ of MS though. And I still miss the old me too.

Sue

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Same here, hate it, annoyed, frustrated, p*ssed off, why me ?, what have I done to deserve this ? I go through all those emotions, BUT, I certainly don’t walk round screaming, shouting and cursing because I have MS, I really do try to keep doing the things I used to do so easily, I still have some banter with people, in fact there’s times when close family and very good friends take the micky but I give as good as I get, a bit of dark humour that doesn’t bother me, but it might others. However, there are times when I struggle with such easy tasks that the angry & frustrated side of me could so easily explode, but at the end of the day no amount of jumping up and down screaming (if I could jump up & down) is going to fix this problem. A strong Vodka & Coke helps though !!

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Over 30 years. Wow. Iwas diagnosed out, of the blue, 2015. It’s been a speedy journey. I’ve got a little while yet I guess, before I come even close to acceptance.

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At one end of the spectrum there are people who are accepting of their m.s. and the issues that m.s. brings. At the other end are people like myself who look at how the m.s has mucked up a lot of their lives and are angry about having m.s. (and please don’t anyone tell me that to be angry is ‘normal’ and that it’s part of the grieving process and eventually I will reach some sort of spiritual ‘place’) But do we, the ‘angry’ ones actually have a voice or are we swamped by those who are more placid. What effect does it have on society’s general response to the needs of pwms if the predominant impression given is that pwms are happy with their lot? e.g. Where are the protests about PIP assessments - protests about the appalling low level of funding for research etc.

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The trouble is, we’re too knackered, disabled, fatigued, worn down by just living, to fight, protest or otherwise shout out that this life is too bloody hard.

I’m always so impressed by people who manage to campaign, fight personal and / or political battles for which I just don’t have the capacity right now.

Sue

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Have we become conditioned to be mild, non-questioning, accepting, servile - conditioned to be happy with our lot? HELL NO… If i was diagnosed with breast cancer I would fight like hell. There is no way I would let a disease get the better of me without a fight that is for sure. Having MS to me is the same. We have been invaded with a cancer so vile, there is no cure, just acceptance of it. We can choose to fight it or well just accept it, and let it take over our lives roll over and play dead for all tense and purposes. To be servile is allowing the disease to become our master isnt it? Non questioning is that to the disease or our errrr professional support? Conditioned to be happy - NO, by conditioning ones self isn’t that a another form of acceptance? Multiple Sclerosis. Is a disease, an invader, an alien in our body. It has taken over our body, and our mind. Is it some kind of parasite that wishes to devour our inner souls, make us become subservient, compliant, quite and mild. It doesn’t want to be bothered with someone who is going to fight its every turn. It too wants a quiet life. To while away its days just chilling out floating about inside us. Being mischievous, jerking our chains, giving us hope one day and dashing it the next. I have decided to confuse it. I used to just let it have its way with me, it wore me down, made me knackered, fatigued, disabled and took away my fight. Now I am BACK. Why or how i have no idea. Perhaps taking myself away from a very stressful situation has enabled me to heal a bit and see things differently. I allowed myself to be dictated by it. Your tired Mrs go sit down for the day, dont make an effort to get up or go out, because if you do i am going to give you pain, and turn your brain into scrambled egg. I realised actually over time, that it made no odds to me, whether i did sit down all day, or go out the pain was nearly always the same. So why was I giving into the MS monkey chatter in my brain? It made no sense. It had such a hold on me that i listened to it. Now slowly I am not having to do so much, i live in small space, my energy and battery reserves are better, and i have more in me to fight. In the last week I have been out 3 times. Sunday my daughter came and i cooked her a lovely sunday lunch it was just like a christmas dinner i havent done that for a long time, and we sat outside and chatted and laughed and i actually felt NORMAL for a change. When she finally left i felt exhausted but happy, i had done something for myself i had LIVED for a change. Yesterday I went out to the Garden Centre, with my PA and my doglet and we had a lovely time i bought some plants and shamefully another solar light in the shape of a flower, my little garden looks like a fairy grotto at night it twinkles and shines i am sure you could see it in mars lol. I bought some nice gluten free treats too, and when we got home i organised the plants and then sat down watching the world go by. Yes i was exhausted but i was so happy I had allowed myself to achieve something. Every day now i am doing something just simple things, i cleaned the top of a radiator got rid of the dust trapped in the grills. LOL you would laugh i invented the perfect tool. A stick from one of smelly things you put the stick in to absorb the smell and a lump of chewing gum, and just lifted the dust up with that…wallah, one clean radiator lol…I mean not much is it, BUT I DID IT. I am looking around me more and seeing things i had blocked off before. Yes i am still in pain, still knackered, still defeated at times, but i am allowing the old me, to emerge again. She has long been hidden because i allowed her too. Yes i had become servile, i had accepted my lot, but do you know what, i realise it makes no mind if i fight as the results are the same, so i might as well fight, and have some sort of life then just be angry all the time, miserable and listen to that MS monkey chatter telling me i am useless, disabled, not worthy. BOG OFF I am not useless, I am worthy, i have a family i want to still enjoy, I have a life, albeit different. Its taken me a long time to get here, but i am slowly arriving. I shant say its easy it isnt. My MS isnt going anywhere soon, so i might as well learn to live with it. Oh yes i am even pushing myself to walk more. The other day I walked a little bit outside my back area communial garden to the hedge as i have put bird food there so i can watch the wild birds eat i love that. Towards the left of me hidden behind a bush i saw something blue and metallic so went to investigate. There chucked on the floor was a brand new bike. Someone had stolen it and dumped it no idea why. I manage to extricate it from its hiding place nearly killed myself doing so, and I pushed it slowly to my flat. I checked it out took photos. Went on facebook to our local group, and asked if anyone had lost a Gateway bike. I didnt say what colour it was. Within minutes a lady came on her friends son had lost his bike on thursday about 3 miles away and this was Sunday. Anyway long story short in one hour bike and owner were reunited and one happy young boy left and it made my day. So that made Sunday even more special for me. Oh and they went and retrieved my pushy for me otherwise i would have been stuck for walking lol. Months ago i wouldnt have even walked to the hedge. I am so proud of myself right now. Yes my legs hurt really bad, but do you know what i dont care anymore. I ACHIEVED SOMETHING. All this may not last very long but whilst it does i am going to enjoy it. I have had such a rotten few years i never gave up. I could have done when my husband died. I have no idea what is in store for me, nor do i care anymore. I have lost friends to cancers, heart disease, friends can barely get out of bed with various illnesses, my brother is in pain all day with hip problems, my daughter has genetic issues in her neck could end up disabled we are waiting on her MRI results…my sister is suffering from PTSD from 2 years of breast cancer…you know in the grand scheme of things what he hell do i have to cry about. My MS actually probably saved me. YES I know you will think what the hell am I on lol…but before it took me down i worked over 65 hours a week, was stressed to hell my blood pressure was 215/115 i was asking for a stroke, then came the first signs and symptoms of MS, and i was signed off sick whilst it was being investigated, and now my BP is normal. It took a long time but it got there in the end. My MS actually slowed me down at a time i needed it. Sorry it all sounds a load of crock, but you know what I dont care anymore, I am trying, and for me that is the main thing. Even my family are slowly finally realising that I am disabled. I know lots of you have terrible MS you have been fighting it a long time, and you deserve to feel angry and fed up, but inside you there is a little of you still there, just remember its not the size of the thing you can do, its just doing something that counts. Just getting out of bed is an achievement, putting one foot forward is an achievement. Supporting people on here is a huge achievement. Some of you have no idea how much help you have given us who come on here feeling down. Without you some of us may not even still be here. Just coming on here and supporting us through our worse days is a huge achievement and you do it because you are still there, because you care and you want to help. Some say they dont have the capacity right now to fight, but they have the capacity to fight FOR US…dont you realise just how amazing that is? You care enough to help, now perhaps you should use some of that for your own fight. I just think your all amazing, wonderful people, who have been dealt one of the biggest blows in life but still take the time to help others. Its almost like your DEFYING MS for us. So really non of your are servile to MS. You are fighting MS maybe not for yourselves but you are fighting it for OTHERS. xxxxxxxxxxx

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Angry? no,not any more. What does that achieve? Everyone’s entitled to misery, anger, upset and negative emotions. I don’t “fake it” - never have - I call a spade a spade. Why should we lie/ tell partial truth? Answer we don’t have to: why do you feel you need to.

Instead of looking at what I CAN’T do and theres a long list; I find what I can do. I can’t garden much, or dance for more than a minute. Can’t bake anymore. Can’t make jewellery. And yes it was frustrating as hell to come to that point. I didn’t just say, poor me and GIVE UP. I did less and less in the garden after fall and doing 20 mins of weeding and being a wreck. Does not mean I have entirely given up - we have raised beds now. Jewellery making: I figured out that really small beads and wires were beyond me, changed the way i did things, took 3 times as long as everyone, but after a couple years, realised I was pants at this!

I have recently got an off road wheelchair. I’m going places I have NEVER been and I’ve been living in this town for 30 years. So yeah there is life Krakowian, just not as you knew it. (sorry star trek)

Conditioned to be happy with our lot? I think not. I became “angry woman with stick” on public transport. But I look at my partner, who is on dialysis every other day, w.o. this treatment he’d be DEAD and that’s not an over statement.

My mom was angry for years. Not at MS, but at my dad. I saw her become bitter and twisted and it physically affected her health. Don’t push people away because life is shit. Ask for help. Maybe find a counsellor.

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This subject is an absolute minefield. People being angry, because they’ve got MS, is an absolutely understandable part of it and a normal reaction to the diagnosis. Some people don’t want to hear what’s wrong, when they ask “how are you?”, the same as some people don’t want to hear others, with MS, say that they’re fine and at peace with their situation. I was diagnosed in 1991, having had it unknowingly for roughly 8 years, and I didn’t reach peace until early 2003, after being in the headspace where I didn’t want to live anymore but I didn’t want to die. The mental journey is what people don’t see and I have Ginny Williams to thank for helping me make sense of it. Her book, about her life with Frank Williams, has the best title of any book that I’ve seen - A Different Kind Of Life. The title sums it up, without anger or prejudice, and it helped me reach a conclusion that worked for me. I’ve had two lives, one without MS, which is long gone, and a second life where I have MS. They’re both very different (I was a Firefighter) but, they’re both worthwhile.

Far be it from me to tell others how to think and feel but, my journey has taught me that my dark days weren’t forever.

Take care.

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Can I respond to your reply Val and to the 7 who liked it. I felt patronised by the reply - to precis my OP what I was saying was that I am angry, unhappy etc about having m.s. and do not subscribe to the concept of ‘coming to terms with things.’ Someone else saying how they have come to terms etc with their m.s. negates the feelings/emotions that I expressed an doesn’t really help. This happens quite a lot - those of us who rage in the night (with apologies to Dylan Thomas) against this disease are often air-brushed out of the picture. There are many pwms whose relationships have failed, who have lost jobs, homes because of their m.s. - have massive financial problems ets. Where are their stories? These people are marginalised because they make people/organisations feel uncomfortable whilst those who are ‘at ease’ with their m.s. have become the face of m.s. -

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I concur

MS though

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I agree with and acknowledge all you have said. With that in mind all I can say is it really doesn’t define who or what I am. I tell everyone who doesn’t mean that much that I’m fine and Mr FB and close family how I really am. I surround myself with positives wherever I can and on the occasion it does get me I let the people around me (including the forum family) know that I need a hand. I’m just making the best of it as I don’t really see the alternative as a sustainable approach to life, it would very quickly just get too much if I stopped to let it. Deluded and daydreaming as much as the next person xx

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Lived on the Isle of Skye for many years and loved the answer many older folk gave when asked the question ‘How are you today?’ ‘I’m in my usual’ was often the reply, which implied I’ve got the same aches and pains that I had yesterday, the day before and last week. Have always thought this is an honest answer instead of saying I’m fine when we’re not.

It isn’t easy having MS or any other disease or disability, and yes we should be proactive in ensuring research is done and the right care and support is available. However, at the same time we need to live. For instance I went swimming at a hydro physio pool for the first time today. I hobbled and struggled to get Into the water, but so enjoyed the freedom I had in the water. Didn’t know I could use this pool, as I would certainly have used it a lot sooner. There were at least 10 other folk with a variety of ailments in the session and they were all super friendly and helpful. Most of them walked a whole lot better than me. So not only did I get exercise, I also got to meet 10 lovely people, who had their own struggles. I intend to go to this session on a regular basis.

I’m generally a very positive person and find it far easier to focus on what I can do and not on what I can’t do. So, I can’t play tennis anymore, but I’ve learnt to sit and play table tennis, which is such fun. (I can’t play for too long)

We didn’t have a choice about being diagnosed with MS, but we do have choices about how we live with it. And, yes there will be difficult and frustrating days.

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We don’t have the energy to be continuously angry. Simple as that. I’m sick of urinary incontinence. My life is damp misery. I know how feckin’ awful it is. I have expensive pills to help with that. I’m on Sativex as my hip spasms are too painful to live with. And then there’s Fampyra. My legs can walk at a normal speed and then my bladder fills up and lets go.

i can’t even get drunk as the betmiga for my bladder doesn’t play well with alcohol. Now,thats a bugger . I want to try jogging but I get UTIs . God! Life sucks. I wobble around like a drunk.

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