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Frustrated, confused, JUST A RANT

Grrrr!!! A rant? I can even think to type.

Normally I’m a positive guy. I never used to let anything bother me. Now i seem to get myself in a mess about nothing.(Which leads to stress-then head pains-and other symptoms flare). That only took 10 mins to write a sentence.

Anyways I’m just “having a moment” and “it will pass soon”. I’m just bored of having Ms, Sick of having to fight myself in the morning. Telling myself “your good, your ready for the day”. I know people without MS suffer from this too, but add the constant tingling pain in your feet and legs knowing it’s going to feel even worse the moment you add hot water from the shower. Aswel as the confusion of trying to remember look at the Calander and plan the day whilst getting a knife slowly pushed into brain in different spots. Thankful those head pains only last between 2-20 seconds, however generally have a constant headache as well. But remember Ben “breakfast, eat healthy and you’ll be ok” so let open the cupboard and get a bowl. SMASH!!! That’s right. this right hands not awake yet. (if its not a bowl it’s the milk or cereal or kettle that one hurt). Eat that. Let find some clothes. Now you would normally go into your closet and pick some you thing looks nice. However I need to look at the weather is it going to be hot as I get dizzy with heat or is it colder than it looks cos I also feel the chill. Let’s lay some clothes out.

But still “let’s get ready” for people without Ms. Think how you feel getting woken up early after a “top banging night”. That’s the energy level I’m working with (as well as above). So let’s get the evil out. As I sit on the loo think of all things i can do that I should be great full for. “Can do attitude” I’m not deaf, i have all my limbs. Whilst sitting there thinking my legs have now got serious pins and needles, but add to trying to balance makes 5 steps feel like 5000. So get off the bog is abit harder. But once up and wiped I can sit down again and wait for the shower to heat up. I stick my hand in as you do to feel the temperature “feels fine”, and slowly step in trying not to slip. And there’s that pain in my feet I was waiting for with the water. As I dip my head in I realise “f*£k me !!! That’s hot Ben” I burn my head and shoulders fall out the shower bouncing of the door. And Yes yet other knife pieces my brain ouch. However lesson learned just need to remember it. So after washing myself at least twice or three times (I always forget, so best to be sue) I heat up in the shower. I’m not good with heat so I get dizzy. I get out and make my way to the window trying to cool down, I bush my teeth look in the mirror and tell myself again "your ok your ready for the day.

Now I feel like that was a half marathon. But now I need to walk my dog what feels like the other half. Luckily she’s very well behave and will pull me to help out. Now this is my favourite part of the day. Yes my feet are still in pain and yes some day I have to stop every 50 m for a rest. And it rains but the dogs happy. And I can go to the shop on my travels. So half an hour later I get to the shop that takes my friend 5-10 mins. Have I wrote a list? “No I forgot”. So let’s sit outside the shop for a few minutes and try to think… Ouch!!! Milk, Ouch don’t need sugar. That will do can’t be taking this knife in my brain right now, lets go in and see what we see. Emm THINGS!!! Right now I feel overwhelmed. And now my legs decide not help pick up my feet. Right army training needed now in and out “let’s do this”. I get the sugar. And get to the til. Right concentrate on what’s she saying (or just smile at her and give her your £10 note in your pocket and hope for correct change). Where’s that £10 quick search, look a fool, hold up th que. then have a vision of it being on the side. Brilliant. Well let’s get these sore feet home, but not before we bump into someone that asks a simple question about the dog. I look at them blankly as I missed the question. They slowly repeat the question. I still look blankly at them I blankly, I’ve definitely heard them but as another knife slowly stabs my brain I can think of what they’ve said or any words to answer. “Do…You…Speak…english?” they ask in a patronising way. Right now I’m thinking I was in the army, I would of knock your head off for a comment like this.But I’ve no energy to answer yet throw a punch. So I just walk off and “smile”.

Arriving home I am “cream crackered” But looking around the house it need tidying (Yes!) I go in the kitchen to find that £10 note on the side mocking me. Time to wash the pots, Hot water, is it? Think so. Pick up a plate and drop it in the wash bowl (now your nice and wet, well done). Oh well by the end I need to get changed again and mop the floor. Walk into the front room a see “that cup” always forget one. So now my balance is well shot and legs are in much pain but luckily I can use the Hoover to prop myself up on. I Brace myself for that instant brain pain that happen when the Hoover sounds. OUCH!!! “Take a breath your ok”. I live in a small flat so doesn’t take to long. Pick up my washing to put in the machine only to find I forgot to take the last load out so have to wash it again

Lunch time. Has tescos been? Open the fridge? Look inside? And? NO! So tea toast and fruit it is. That’s good cos I couldnt think to put a sandwich together. “It’s ok Ben, only half a day left”.

Passed out asleep no warning.

Woken by my feet burning feeling like someone’s put them in a oven at 250’/gas mark 9, quick stumble outside, bounce of that sofa, stagger into the door, off the wall, and I’m outside. Forgot to take my sock off tho. Try and sit on the step. Or even better fall down. Remove socks and finally feel the path is… Not cool. Ouch!!! To the bath!!! “Now pick yourself up and smile and wave to the neighbours. Show your ok Ben”. Right they’ve gone. Now climb up that step, fall into the door, bounce off the sofa and get on all fours. Less pain this way. Crawl to the bathroom. Pull myself up. Sit down put get in and COLD WATER ON. Ahhhhh! So I sit for 5 mins cooling my feet, thinking of the “can do attitude” a least I’m not blind I tell myself.

Now cooled I stumble to the front room to seeing the dog with her legs crossed. Time to take her to the back. Not far. For most. 20 odd steps. I ready myself and hopefully I’ll be ok. Off the step ok, good start. I stumble to the garden, and see all the gardening I want to do. Grass needs cutting. Flowers need planting (Not happening today). Back inside in my seat. This seat is where I spend most of my day. I eat lunch here I fell asleep here. I sometimes I feel like my whole world revolves around this point. I thought because I’m just sat here fighting head pains, fatigue, and tingles. I’d try to learn the guitar, something productive. Only I not only struggle with rhythm, I struggle to grip the pick, and forget what I’m playing. Yes it feels like like 1step forward 5 steps back. So I give up. My brain pain is to much trying to concentrate. I turn on the TV to see Jeremy Kyle. OFF!!! To late. Now I’m thinking I’m no better than some of the people on there. I take money off the tax payer. (“But it’s ok for you, you have a reason, your disabled”) that’s fine then is it? I don’t really give back to the community. (“You’ve not got the energy”). i can’t really go out without getting overwhelmed, anxious, and fatigued quickly. I’m not driving yet. (Don’t think I trust driving anyone).

With all of this it’s hard to believe a catch like me would be single. But yes I am. I was dating a old friend at the start of the year but, I blew it. I couldn’t handle the pressure and stress of a relationship (really wasn’t stressful)I couldn’t be the person I wanted to be around her. She was more than patient with me. I really loved her too. I did think I’d do anything for her. And when I couldn’t I got frustrated. Which lead to having “this attitude.” And I hated myself for feel like this when I was around her. I wanted to make each day amazing for her, but would struggle to get by the day myself, I’m gutted. She’s happy now and has a new fella. I’m not bitter I’m glad she found someone that will hopefully love her as much as I did. However I think I’d find it hard to find anyone that would love me. Who cold blame them right?

Well that’s it for me now taken all day to write. I’m not after sympathy please. Just glad I wrote down, how I feel.

Keep smiling

hi benjaminhippie

you really needed to let all that out didn’t you?

positivity is a self inflicted curse y’know.

​like a hangover without the pleasure of drinking.

never mind we both know that you won’t feel this way for ever.

are you really a proper hippie?

just in case - peace out man!

carole x

I ran out of steam at 4am But yes!! Feels good to get things out.

am I a proper hippie? Well I live in a house not a tent. I like to be clean. I don’t protest march.

But I believe in a lot of morales and values they live by.

Sorry peace out

or as I say

“Keep Smiling”

hiya

i hope you feel better for getting all that out!

just one thing when u ask about who will love you etc. thats not ur decision/problem to worry about!

yes ms is relentless and full of surprises so deal with the things u have (mental) control over and not other peoples thoughts/feelings

we lose so much in our control but please dont add in things that are outwith your control in the first place.

ellie (an oldie who has learnt to keep her mind strong and focussed no matter what challenges my carcass throws at mine)

1 Like

You have been going through a rough tme.

This disease can make life hellish. The fact it has such a multifaceted affects can really make life like walking through treacle…literally as well as figuratively.

I am lucky I have a loving husband, but this disease has changed our relationship at times, him being my carer sometimes put a strain on us. Struggling day to day in similar ways to you I feel that at times I do try and put on a front to keep going, and often do not ask for help because I do not want to be a burden. I have applied for both direct payments and a canine partner assistance dog to aid my independence, so I can be a wife again! You sound like you are struggling, have you tried your local social services to ask for help day to day, even someone checking you have that £10 before you leave and coming to the shops with you could make a world of difference.

It is a double edged sword being in a relationship. Maybe focussing on getting things right for you would help you be in a better place so if the right person comes along you are placed to be able to find someone who could love you for you, instead of you being defined by the disease, it is not you, it is just overwhelming you right now.

Good evening Ben, that was a heartfelt splurge of writing. Well done for being honest, and so no your not blind, but you got the dog out for a wee and I’m pretty sure it would have appreciated you for it.

And like you say getting up, cleaned and dressed seems a small matter but it’s not.

Hope you feel better and if you wake up tomorrow in the same mood, have another rant…Xxxx

Hello , just reading your comment . And you made me giggle :slight_smile: thought was just me that felt all what you have wrote on here . Yeahhh lol I’m not on my own! ! Had this thing 15yrears .my first in seeing this sight , my daughter just put me on this .so keep smiling .im the same !! Lol

hiya

me again. ur comment about giving back to the community-u r part of this community and u have no idea who has read your post and what effect/benefits its had on them. its gave me something to think about!

ellie

BenjaminHippie,

You needed to let all of that off your chest - And don’t worry about letting rip - ranting on here. So many of us no exactly how you are feeling - and it also lets us know we are not on our own.

l have been busy following a facebook group - called Biotin for Progressive MS. Started about 5weeks ago when the results of the phase111 trial came out. MS sufferers all over the world have joined. lnteresting folk. Apart from the Biotin - we have got round to discussing other meds that help or have made lives worse.

lt seems most of them are taking LDN - and l have for about 8yrs. With lots of benefits. And several of us who have started taking the Pure Biotin have noticed some good results. Although, the trial was for progressive ms - l am in no doubt it would work on all types. lts a water-soluble supplement called B7 - and we are also taking B1 Thiamine with it - that also helps with fatigue.

Some of the chaps - have posted that they have noticed a return of ‘‘sexual arousement’’ - and one said that he thought that side of his life had gone forever. Too much information - maybe - but l thought l would spread the word to the boys.

And also some of the members have had HSCT - the stem cell treatment. And CCSVI - quite a few of them. They all said they had some benefits from it - but from what l gathered - not enough to warrant going through those procedures and also the financing of them.

They also discuss other meds - especially Baclofen - which gave me disasterous results - they all said how Baclofen left them almost wheelchair bound until they decided to stop taking it. lt made them weak- brain fog - unable to cope. Which is just what it did to me. So l was wondering whether you are taking meds that perhaps do not work together - Baclofen/Tizanidine/Gabapentin/Pregabalin - as they all can make matters worse in people they do not suit.

l cannot walk without a rollator indoors - and outdoors l have a all-terrain scooter - a Tramper. l take my dogs out over the fields and woods in all weathers everyday. l have 2 rescue Rotties and a Romanian Sheepdog - also rescue. They give me a purpose in life - make me get up in the morning and keep me busy all day. They are my best friends.

My MS started 33yrs ago - so l am one of the ‘oldies’. LDN does help keep me feeling positive - and clears my head.

To help your poor feet - get a bowl of water - any temperature that suits you and put a tablespoon of Epsom Salts in - and have a good soak. Epsom Salts is Magnesium - and it does help with painful joints and muscles. Most chemists will stock it.

Hope you are not feeling quite so bad this afternoon.

Thank you so much everyone who has read or commented on this

i will be posting a better reply soon

keep smiling x