Getting it out there!

Everyday living
1

Hello everyone!

i have to get this off my chest and out there!

So apologies if this meanders all over the place.

i have been diagnosed with MS for about 4 years now.

my early days symptoms were numb feet, legs, fingers, groin, hug, balance, fatigue and very many trips to the toilet!

the numbness eventually subsided, apart from finger tips and toes. Trips to the toilet subsided but have increased of late, in fact last night I think I went almost hourly for the whole night.

Over the past year or so my thighs constantly feel cold and sort of stiff? Hard to describe really,but I don’t think it has affected my balance or walking?

i have attended hospital for scans etc…and last year it showed 2 spots in the brain.

to be perfectly honest I have put it to the back of my mind and try to forget I have this condition!

i have even stupidly kept how I really felt or the symptoms away from my GP and MS nurse.

again if I didn’t say it it didn’t exist?

crazy I know but that is the only conclusion I can come to for this behaviour?

Anyway I have always continued with work and fairly recently I applied for and got a good management position, which also entailed relocating from Scotland to England.

Everything started well enough but fairly quickly fatigue started to affect my stamina and performance levels.

I also noticed that my memory was starting to play up?

i have had problems with trying to find the right words at times, even forgetting what I was saying sometimes? Which has proved to be equally embarrassing as it is frustrating!

The memory loss really kicked in about a month ago, not all the time but enough for me to fall behind with ordering and reports.

i had kept this memory problem hidden from my employers and also my wife which I know is totally selfish especially with how she has lovingly supported me all the way.

I suppose it was my way of denying my condition by ignoring it completely.

the upshot of all of this is that it has caused my contract to be terminated.

Now i feel so low that I am sure I am suffering from depression on top of it all and I really am struggling to deal with the situation and take this all in and feel totally lost? I have never felt this low and worthless, never! I don’t know which way to turn or whether I should look for work with the fear that this will repeat itself and I have to go through all this again. I feel guilty enough that I am putting my wife through this turmoil without doing it all over again.

This isn’t how it should be! I should be there and be strong for my wife and I feel like a quivering wreck!

another thing I noticed was my left eye was moving back and forth very quickly,like a tremor of sorts? Is this part of MS?

again apologies for my ramblings!

2

hiya

just want to say i have read this and several things jump out at me! however i am shattered but i will respond in next couple of days, promise.

scots ellie

3

No worries Ellie!

4

hi bob

so sorry to hear that your employment has been terminated.

get some professional advice - either ms society or CAB.

have a good honest talk to your gp who can refer you for counselling and offer anti depressants.

let your lovely wife in, give her a cuddle - nothing beats a good snuggle.

its rubbish this ms and you’re understandably upset at the moment but it doesnt have to always be this way.

rest up, take your time and then get on with your life.

carole x

5

hiya bob

firstly i have no idea of ur age/kids etc so just ignore anything thats not applicable-thats of course ignore it all if it doesnt lie easy with you!

i see carole has replied-i agree-give ur wife a hug, no words needed tho.

i have always maintained its harder for family/friends to watch us struggle knowing theres nothing they can do to change/halt this cruel illness/disease.

i am a single mum of 4-three still at home with me and i have learn to be truthful with them simply because if i tried to cover up then they are not stupid! if i claimed to be ok when i obviously wasnt then they would question (in their heads mostly) why i was lying. and an honest answer is better than their mind running riot and thinking i am dying (we all are, i mean prematurly) so honesty is best for everyone in the long run. that starts with yourself then slowly whoever u want to include. u have already touched on this urself and so am guessing u know the consequences!

society has alot to answer for in the sense that men must be tough and not show their emotions-i know thats generalising but am trying to be honest here! men showing how they are feeling is not weak but i guess u are made to feel that way? (i can only observe/guess on this one cos i am not a guy!) but i do believe its an extra pressure that guys have that i dont.

you say selfish re not telling ur wife-i would suggest you thought you were protecting her *see above re ur good intention but why it may not be the case in reality.

re 2 spots on ur brain-i have discovered its not how many but which areas they affect thats important. i have loads but a huge cauliflower shaped plaque that covers loads of affected things including emotional lability. for me that the hardest of all the things i need to cope with. (oh, i dont intend to make this all about me, u can read my previous posts if you want to know a bit more re my situation)

carole is right when she says there’s support out there-access it in whatever way suits you. but can i also point out its down to you! others (friends and professionals can try to understand but they cant. in fact folk on here have a better understanding but there is only one you! i cant know you are feeling but i and others can listen with more understanding than joe public)

u mention guilt. may i suggest u never use that word again! its crap being a human-such complicated emotions ! we use them correctly sometimes-fight/run eg but it also gives us opportunity to beat oursleves up! any decision u make is based on what u thought was right at the time-no need to relive and go over and over again. be kind to yourself!

eyes going skelly now! however please read some of my others posts and u may realise why i am so passionate about keeping yor mind strong when ur body is failing you! look at meditation-its saved my life-literally…

i have probably just given u more to think about! its not a quick fix-but if you strengthen/order ur thoughts i promise then life will become simpler/easier.

ellie

6

Please don’t suffer in silence. I too adopted a policy of ignore it and it will go away, and it sort of works for a while.

Do tell your wife how it really is, she might have guessed already that you’re not telling her everything. You should see your GP and/or ask to be referred to the continence team, bladder frequency issues can be resolved with medication or if it’s due to a urine infection antibiotics will sort it. Your GP can also help if you are depressed. I see you have an MS nurse, that makes you one of the lucky ones! Make contact and be honest, they can’t help if you don’t tell them.

As for work, I’m sorry I don’t know where you go on that one, but I wish you lots of luck and hope things improve for you soon.

7

I am sorry things are going so badly for you, really sorry. Have you thought about getting a referral to a neuro or at least an MS nurse? Lots of the problems you’re describing can be helped, by drugs or self-cathaterisation. I understand how you might want not to see a professional if you’re still kidding yourself there’s nothing really wrong. I tried to do this for years but my other half always insisted that I should see a neuro (saying “they could find a cure and you wouldn’t know” amongst other things). But it really is better to get the professionals involved.

8

Bob… what we have is a bugger of a thing! It is so diverse and variable, we could argue that other people diagnosed with MS can’t truly appreciate what each of us are going through. Even the bloody doctors shrug their shoulders, smile kindly and say “we simply do not know the answer to that!”

With so much isolation we have little choice than to indulge in some good, solid denial. Especially as we are supposed to maintain such a positive and healthy attitude! Add to all that, the stiff upper lip of machissmo!

However, we live in a dog eat dog world where no one is owed an income and here a reality needs to be confronted; we are disabled. Some considerably more than others, but even if only labouring with one numb finger or an occasional risk of forgetting what the hell we’re talking about, we… ummm… what…?

The point is, people without the diagnosis have an unfair advantage over us. BUT… we are blessed in that despite the brutality of this existence, there are people who love us and a network of support available to us. SO USE IT ALL! Tell the doctors everything, tell the missus everything, tell your employers nothing (unless, you think they might immediately fire you and you could sue them for discrimination!)

I give the nurses and neuros a full run down; i maintain a complete diary (of improvements and declines in symptoms); i always go over my allotted duration; they aren’t (yet) gonna give me the cure, but they do have access to a prescription pad!

My missus receives regular updates of all my various ailments (whether she wants them or not). For sure sometimes she feels down, but at the same time she shares the up sides; she was once transfixed by my being able to use chopsticks again (eating sushi with a fork is frankly quite bollocks). My sharing with her, allowed her to enjoy the little victory.

Ultimately, i cannot tell you how to stop those anxious thoughts that fill your mind as you try to sleep each night. But one thing that works for me, is the stubborn conviction that what is plaguing me currently will not last forever. (Its my hang over mindset: it won’t always feel this bad.)

Share with those you trust, the things that pain you. And use this bull5hit condition to treat yourself to the best things in life and never give up on the idea that tomorrow you could wake up feeling improved in some way or you’ll hear of a miraculous new therapy.

9

Hi Bob, I can only echo what everyone has said Open up to your wife, she’s probably worrying more than you realise. Get in touch with your GP, you’ll get help with the depression & you can also ask to be referred to a neuro. You need to be straight with your MS nurse, they are worth their weight in gold…but only if she knows how you’re feeling. You will feel better than you do now if you ask for help.

Rosina x

10

Thank you,thank you all for the support, home truths and great advice!

It is much more appreciated than you will ever know!

I am sitting here with tears streaming down my face, something I thought I’d never do, never mind share with anyone! The beauty of a faceless forum!

I opened up to my wife yesterday and it all came flooding out, I can tell you there was an overwhelming feeling of relief of finally being truthful with her.

The downside was the look of shock and seeing her upset! That was something I dreaded and vowed I would never put her through!

She is obviously hurt and confused as to why I kept this from herself but she gave me her unselfish love, support and understanding,as always!

she did say my pride and stubbornness is stupid and pointless as it achieves nothing!

I am truly humbled and blessed that I have someone who loves and cares so much and she has vowed that WE will get through it together.

Sadly I still feel at a loss and saddened that I am putting her through my problems, it shouldn’t be this way! Whether this is down to my social conditioning, that tears and opening up is a sign of weakness I really don’t know?

I have made an appointment with my GP and will see him on Monday and I am trying to get into my head that I have to open up and be truthful for once. The usual response from me is to sit and say as little as possible whilst repeating the mantra that I am fine,when I know full well that all is not fine! Again this is the fear of admitting a few home truths and seeing myself as someone who has an illness!

and here’s the crunch, I know there is help out there,whether through medication or therapy of some sort but I keep on thinking that there are people out there who are far more deserving of that treatment than myself !

reading through the various posts and threads on here reiterates that for me, there are many people out there who are suffering far more than I and what gets me is the bravery shown by you all in the face of what is seemingly overwhelming odds in your illness that further shames me with my pathetic ramblings and concerns!

starting to ramble again, if truth be told I am struggling to get across what I want to say and share with you!

Again please accept my overwhelming gratitude for all your help and support in this!

thank you!

1 Like
11

Please, please stay strong and be completely honest with your GP. He/she is a professional and hopefully will be able to get you the help you need. MS is a vile disease but there are treatments that can help massively - you need the help now and then (again hopefully) you will not get to the low place that you could otherwise end up in.

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don’t feel guilty for asking for help from your doctor.

yes some people have a dreadful burden to deal with but the national health service was created so that everyone (includng you) can ask for help.

by asking for, and getting, help you will make things easier for both your wife and yourself.

it is one of those growing up moments - (even at 56 i still feel myself growing up)

when you feel bad about yourself just say “i am dealing as well as possible with an unexpected illness. i am strong. i am not a fake”

or whatever you feel you need to hear from yourself

carole x

13

hiya again

bravo to you-i sincerely mean that.

please never compare yourself to anyone else. if u have for example one numb finger thats upsetting/distressing you then thats the same as the whole of my right side not working!

before u try to ‘justify’ why i am worse let me explain my view on it please… its not the ‘malfunction’ thats the real issue but how u cope/deal with it. i have learnt to accept and not fight ms. thats a term that many use and like but its not for me. i prefer to enter battles i am going to win, i have learnt that ms is more powerful than me-its taken so many physical things but it will never have my mind/spirit!

thats probably a bit too deep for you now (i say that cos u have loads going on/to address)-i do recall the early days of my ms-just something to keep for the future perhaps?

take care

ps if u can clone ur wife i want her as my friend!

1 Like
14

i know the feeling of selfishness; thinking that you are taking time and resources away from others who are suffering so much more than oneself.

but the fact is, if you neglect the current situation, you are failing to address an illness that could progress into you becoming one of those ‘suffering so much more’!

practical tips:

  • go to your appointments prepared with a symptom diary and list of questions; know what you aim to get out of the meeting;
  • remember that doctors etc are good at weeding out the time wasters; so let them decide if you are taking away time from others who ‘suffer more’;
  • they are never going to run out of drugs and therapies to help you and everyone else;
  • by taking the best care of yourself, you are also helping to maintain the peace of mnd and happiness of those who love and care for you, so do it for them.

A quote i enjoy (from Swank) - having MS is above all, a call to live life to its best and fullest.

2 Likes
15

Ellie, I don’t know how she manages, I really don’t? especially just now considering we are in rented accommodation with no income, me all over the place! She is only a wee thing but a heart and courage of a lion! A bit like yourself going by your posts!

Paolo great advice, especially the diary!

Carole, everyday I try to grow up, a male thing my wife says!

sewingchick, vile is probably the best word to describe this disease! I am now questioning if it is my job/ financial situation making me feel this down and empty or if it is heightened by the MS? I honestly have never felt this way or had the dark up rational thoughts I have been having.

I am trying so hard here to sound positive as I don’t want to use this platform as a poor me thread!

Some great advice from everyone, as usual, thanks, thanks, thanks! but as hard as I try I can’t seem to shift this feeling of guilt, one part of me is shouting to wise up the other part just wants to curl up and close my eyes? I hope the doctor will help me out on Monday? I have no doubt he will but I am dreading the prospect of speaking up as I know I’ll struggle to keep my emotions in check! Again the by product of my stupid pride! But I do know I. need help !

Nightmare of an afternoon trying to fill in forms for job seekers allowance ( all the more confusing as I have never claimed a penny in all my adult life) trying to work out if I will get help to pay the rent,council tax etc… It really does feel overwhelming and I suppose this illness is not helping matters!

This might sound a stupid question but does anyone know, in their experience, if citizen advice is the best place to help out with forms or is there a better alternative?

thanks for listening

16

Hi Bob,

Contact DIAL http://www.dialuk.info/ who will come around your house and help with the forms. Or Benefits and work http://www.benefitsandwork.co.uk/ who give excellent advice costs ÂŁ19.40 per year. The DLS give excellent free advice http://www.dls.org.uk/advice/factsheet/factsheets_download.html it is essential you get help.

G

17

Hi Bob,

well done for opening up to your lovely wife, I’m sure that’s helped you both…now you must get rid of the guilt you feel because all those negative thoughts won’t help your MS. It could have just as easily been anyone else to get this disease, it just happens to be you!

Try very hard to be truthful with your GP, he can only go by what you tell him & may well be able to help with the dark cloud over you at the moment. Nothing is permanent, it may be that you only need help with your emotions for a while, to be able to think about things more clearly. Do you have a neuro looking after you? If not, ask for a referral to see one, then maybe you could get some info about DMD’s?

Although you’re feeling down at the moment, it’s not always going to be this bad

Rosina x