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Damn These Walls

Hi, first post here, so hello all.

So the sun is out, boy did I love the summers, still do, one problem I have PPMS, diagnosed in 2010. HEAT, Legs have been shot to pieces, spasms, total energy meltdown, brains gone and lost itself in the fog, all the usual ( as you are all very aware of!! ) I am not a negative person quite the opposite in fact, but I so need to have a major Rant !.

When I say damn these walls, I don’t mean my accommodation, I live with my grand daughter ( lost my wife 18 months ago ) I have a downstairs bed room with en-suite wet room, flat access, etc… so really am very lucky, and I am grateful for it. I am talking about the walls this damned evil condition puts around me, and on times it ****** me off totally !! I loathe it when motivation goes away, I feel useless and a burden to those I love. My family are really very good to me, I have plenty of support, it’s the days when I can’t lift myself up to see over the walls that make me feel so bloody desperate.

Ok, rant over, I know that was a little negative but just needed to say it. If you feel kind enough to comment please do not be put off by the neg’s, most of the time I’m an ok bloke… really !.

Hold on to the positives, yesterday my grandson brought his end of year school report, it was so good it made me want to cry, then my grand daughter walked into my room and said " hello Bamby, how are you " and gave me a big hug and kiss…that did bring a tear !!

Thank you for listening/reading hope the heat isn’t getting to you too much.

Hi Solo

And Damm these b****y computers…I just typed you a long reply and pressed the wrong button and it’s gone into cyber space!

So Damm to MS tremors!

I wanted to say welcome to the group and please don’t give yourself a hard time about feeling a little negative sometimes, we have all been there, and we do understand.

Hopefully this time you will receive my shortened response to your post!

Pam x

2 Likes

Hi Pam

Haha been there on lost posts, so frustrating, spend an age typing… then gone in a microsecond !! thanks for your comment and understanding. Just a bit down yesterday and on occasions it can start to run away with you. Feel a bit better today, you would think after 10 years you should be prepared for “The Episodes”, creeps up on you though and says “still here”.

When I was first diagnosed my MS nurse in Rookwood gave me a booklet, and there was a foreword written by another Specialist Nurse and the opening lines were " So you have been diagnosed with MS, welcome to the rest of your life" next she stated " it will take you about 2 years to fully accept it" at the time I thought wow that’s a bit blunt, I now realise she was right, it did take me a long time to accept it on a mental and physical level. To be fair the advice that followed was bang on, it was about learning to manage yourself, what help there was, and how you could help yourself… all good advise, just some days it all goes out the window!!. Fortunately been blessed with a pretty good bounce back attitude, so back to getting on with it.

Been on various Forums, and as I said my first time here. Reading some of the posts here makes me think " you know what buddy things ain’t so bad". It is true about MS ( The Beautiful Disease ) I sometimes meet people and they say “Oh you look well” and most mean well, but some have a look in their eyes saying “thought you were ill”. A bit cynical of me … perhaps… Forums like these are so helpful for people with this condition,I say that because the bottom line is that we with it, are the only ones with a true understanding of all the effects. So it’s good to talk/read and good of people to share their experiences and give encouragement and advice.

So thanks again for the welcome it’s appreciated

Steve

Hi Steve Welcome to the forum. Don’t apologize for ranting, we all need it and here nobody holds it against you as we do it too. Often it’s about the silliest things that have just been the final straw. And no it isn’t just you who gets angry with the people who look at you as if you’re looking for sympathy or putting on an act so you don’t have to work on those days when you make an effort to look well, or when your symptoms aren’t as obvious. Oh the joys of the invisible illness. I wish some of those people could live our lives for a week or so. I’d never wish it on anyone else permanently, but a pill that put them in our shoes for a short time and I’m sure their attitudes would change. Take care Cath

Hi Cath, thanks, glad to be here. Sometimes thought if only you knew “how this is” about some people, including some family members ( minority), especially when you hear the snippets of information from the gossipers about something, someone allegedly said about you. Guess that wont change so will not waste my energy on it. I have learnt to… on the days I can, I do. On the days I can’t I don’t, Dealing with daily life is now dictated to by how I feel “on the day”. I also have not lost sight of the fact that not all my actions and feelings are because of MS. Your right, we would not wish this on anyone. I keep my thoughts and actions as positive as possible and fortunately still have people who will listen without prejudice. This condition has taught me so much about myself and others in the last 10 years and I am determined to keep on learning, wherever this journey takes me. You take care as well Cath Steve

You definitely have the right attitude Steve. I always try to be positive too, although there are times when family and friends have told me off for not being honest when it’s obvious to them that I’m struggling. I’d still rather have them tell me off for that than be called a misery. What people don’t seem to understand though is that our “normal” and theirs differs a lot. My daughter had backache the other day and asked me how I cope living with it permanently and the only way I could answer was tell her that I don’t know what it feels like to not have some degree of pain.

There are some days when it only gets bad if I move a certain way, but other times it’s just relentless. The same goes for most of my symptoms e.g. balance, coordination, brain fog etc. It would be wonderful if I could have a few month’s time out where I’m symptom free but unfortunately it’s not going to happen.

After seeing the effects of some other illnesses on people, for example my dad died from Motor Neurone Disease which is one of the cruelest things out there, paralyzing all the muscles but leaving the brain fully functional, I count my blessings all the time. It may not appear it to other healthy people but I think I still have a decent quality of life. I have a lovely family, friends and a comfortable home where I’m happy. I have crafty hobbies I enjoy and when I’m not up to that I have a good selection of tv channels and a kindle to read books on. What more could a woman ask for?

Take care.

Cath

Thanks Cath,

Yes our attitude can sometimes get our families and friends backs up, but you are right, maintaining a certain level of independence is also very important to our well being. Weird isn’t it how pain becomes a part of you, we dull it with Med’s but it’s always there in varying levels and after living with it for so long I guess we become a part of IT.

Sorry about the way your Dad passed, I watched as my Wife passed with Lung Cancer and Fibrosis, it is not an easy thing to live with, seeing those you love suffer in such terrible ways and does make us reflect deeply on a personal level.

I am currently going through a crisis situation with a family member ( story for another time), and it is so tempting to use my situation as a yardstick to say " you want to count your blessings", but I won’t because I feel that is not fair. I to feel that my quality of life is good despite MS and I will not let “poor me” syndrome become dominant, but sometimes it’s very tempting to use it. Their and Our normal are indeed light years apart, and wish I had a quid for every time been called a misery!!

Asking for more! now and again is OK! (ha ha) Why not, we are still entitled.

Cheers Cath

Take care

Steve

I’m sorry to hear that you’re having a hard time at the moment Steve. My daughter who is 21 and doing really well at uni has just been diagnosed with Chronic Fatigue syndrome so I can sympathize. I won’t compare what she’s going through to what I am as I’m obviously heartbroken for her sake. On top of that she has other health issues which I won’t go into. We have some symptoms in common and others we don’t but for me the worst part is her age and future.

I have had my career, motherhood etc and all she’s had is studies. To give her credit, she has already lined up an apprenticeship after her final year of uni next year, instead of going for another year to do her teaching degree, and she and her boyfriend are still talking about getting engaged, married and the names of all 7 of their future kids.

I’m at a different stage in life and although I’ll never go and dive the great barrier reef, raft the rapids at the grand canyon etc as I have always dreamed of doing, I will keep on with my hobbies and a trip to see the Edinburgh Tattoo was really enjoyable and enough to tire me out.

Take care and I wish you well with your current stress. I can’t imagine what it is like to lose a spouse like you did. Although I lost my dad who I was very close to, I suppose we all know that the chance we’ll lose our parents during our lifetimes is very high. I was lucky to have him as long as I did considering his diagnosis. I lost my husband to another woman a long time ago and was actually very grateful to her for giving me the push to leave him. Another blessing!!

Cath

Hello Steve.

Walls, marathons and mountains are part of our life. I always say play the beast but don’t fight it.

You can do things knowing full well you’ll be floored by the consequences but it never stops me. Planning through experience can get us around the walls but days of heat require extra care. And this is the place to rant if you’re frustrated.

Welcome to the group.

Steve

Thanks Steve

Yep all of those, took me about 2 years to learn and your right, still have the capacity to “misbehave” though and I do, but fully know about consequences. Now and again just got to say S*d it and pay the price!!

Thanks for the welcome Steve, glad I came, some good people on here.

Steve