Forum

coming to terms

hello everyone am new here my name is lee am 33 and i was told i have ms 2009 for passed 4 years i have locked it away and not spoken about it but passed year everything has worstened and i have had to come to terms with it i have lost my job after 18 years of same job i feel so upset with everything whats going off and i have no control over it and it scares me my wife is tryin to help but i dont want her seein me like this and my children its so upsettin could anyone else tell me if they felt like this thank you

Hello hun.

I have always thought it must be worse for a man to have a serious condition like MS than a woman.

Now some women might be annoyed with me for saying this, but let me explain why I feel like this.

It`s because in the natural world it is usually the man who provides, protects and supports the family.

If ever I see a man in a wheelchair, being pushed by a woman, it makes me feel sad them.

I do have personal knowledge of life in a wheelie, as I have lived like that myself for a long time.

So, back to your and your current feelings…

about your job…were you retired on ill health grounds and have got the enhanced pay out and benefits? I hope so. If you haven`t and are unsure what you may be eligible for, have a google on the DWP pages.

About your relationship with your wife…being open and honest is the only way to get through this. Shutting her out will only worsen the situation. As she is already trying to help, then please do let her.

Regarding your children…depending on their ages, they need to know they are safe and not going to lose their dear dad. Hiding the truth from them could make them feel scared and confused.

The MSS provide literature suitable for children, to help them understand what`s happening to a parent.

I dont know if any of this helps, but I hope so.

Look after yourself and dont be too hard on yourself, eh?

luv Pollyx

Hi Lee,

I do agree with Poll. Although more women get this condition, men tend to get it worse. And if you are used to being independent and the rock for everyone else then it is so difficult to admit you need help. I would also say be honest with your wife - you can get through this easier together than keeping it all in. And if you ever need to rant about the condition then that is what you use the MS forum for. I doubt you will have any symptoms that haven’t been experienced by some-one on here and you know that we DO understand the frustration you are feeling.

Maybe speak to your MS nurse if you have one or to your GP and they may be able to recommend a group or a counsellor than can help. You are not alone in this, take comfort from the fact that understanding is only a few electronic lines away.

Take care

Kelly x

Hi Lee

I was going to give you advice but who can top poll and kelly?

Take care, look after yourself, come up with ideas of things to try

such as LDN, HBOT, complementary therapies.

Carole x

Hello Lee

Its not easy to accept that you have MS. I was in denial for many years. Eventually I had to stop work and it was only then that I accepted that I had it. Try to find someone who will listen to you so you can unload all your MS frustrations, worries and everything else. Either a really really good friend or a counsellor.

You have also got to be straight with your family, they are your support. They need to understand your problems, stand by you and help you.

Its really hard, I’ve been sliding down the slippery slope since 2000, 5 years after my diagnosis. I sympathize with you. It takes you to places which you have never knew existed or dreamt of.

Keep your chin up smile and don’t let it grind you down

Patrick

Hello Lee

Its not easy to accept that you have MS. I was in denial for many years. Eventually I had to stop work and it was only then that I accepted that I had it. Try to find someone who will listen to you so you can unload all your MS frustrations, worries and everything else. Either a really really good friend or a counsellor.

You have also got to be straight with your family, they are your support. They need to understand your problems, stand by you and help you.

Its really hard, I’ve been sliding down the slippery slope since 2000, 5 years after my diagnosis. I sympathize with you. It takes you to places which you have never knew existed or dreamt of.

Keep your chin up smile and don’t let it grind you down

Patrick

Hi Lee

As Carole says, you have already had some really good advice. I can’t top that but just wanted to add that it might be worth your while to join your local MSS branch.

I took the plunge 4 years ago when I was newly diagnosed because I needed to meet people who understood what I was going through and I needed to offload. It surprised me how many men there are at my local branch and a lot of them are either PP or SP. There are separate coffee mornings for the carers and that is their little bit of me time once a month where they can share how they are feeling and where they all understand each other too. That may be something that your wife might enjoy. It would perhaps ease your mind that she has a support network too. I found there are people of all ages at my local branch and although it took me a few months to get to know people well enough to make real friends there, they were all very welcoming immediately.

We have monthly social evenings and I go along when there is something on that interests me. We sometimes have day time events which involve the whole family and which are child friendly. It can be a useful way to show children that life with MS can be fun and interesting and is not all doom and gloom.

Just a thought on top of the excellent advice you have already had.

Tracey x

Hey fella

From one bloke to another, don’t try and hide it from your wife and family, it is going to cause more harm than good. I am 41 and got diagnosed in 2006 and had it for almost a year. It took me four years to get my head around the fact that I have MS. I lost my job as a direct result of it due to disability discrimination and it was probably the darkest period of my life so far. My Mum said to me something that was very true and didn’t realise what a wise ole bird she can be. She said to me “Not asking for help or talking about is giving in to MS”. This is where you need to be strong and talk about it with your wife and let your children know as well what is happening to their daddy.

Let me tell ya this now, you life isn’t over, it’s just a new chapter. As corny as that sounds it is true, look at me. Since starting Tysabri 4 years ago I have not had relapse (admittedly my mobility has worsened but that was due to the DWP taking 6 months to sort my DLA claim out). I am currently on ESA but I will be totally and utterly bu*gered if I am going to stay on it. To that end I completed an Access to Health Studies course to try and get on p/t OT course at my local uni. I didn’t get on it due to not having the necessary work experience, which I am now getting as I am volunteering at a local hospital home for retired veterans. I have also started playing wheelchair basketball and have recently managed to get a basketball wheelchair with funding from various charities including the MSS. It is by far and away the best thing I have ever done. Yes I have to use a wheelchair to get out and about and I had to use one to go and see bro out Down Under.

Life doesn’t stop because of MS and it just means that you have to make readjustments. The most important thing that I have learned is worry about the things that you can control and don’t worry about the things you can’t.

Andy

Sorry for feeling so bad mate , I completely know how you feel. I’m awaiting DX but been told 95% positive. I have tried to stay positive but as a 46 yr old male reading this has reinforced my thoughts that it will just get worse for me and very little chance of keeping my mobility in the future. Have had this flare for 16 weeks now and the pains in my legs & arms refuse to end , really not looking forward to much at the moment. Sorry for rambling , hope you start to improve Cheers Gray

Hey Andy!

I think your reply to a fellow fella is just spot on!

You have a great positive outlook and going for re-training is admirable.

I have said for a few years now, that if I had my time over again, i would have loved to have been an OT. I am 60 now and well ensconced in retirement!

I`ve had the help of several OTs over the years and found them all to be the kindest, most knowledgable bods ever! Their dogged determination to help is amazing! I am working with one now in the hope of re-furbing my wet room and supplying a bespoke riser/recliner chair. She actually told me she likes a challenge and I am just that!!!

So I wish you well in your studies and life to come.

Go fella, you can do it!

luv Pollxx