Forum

No Real Support

Just feeling fed up today. I was diagnosed with ms 12 years ago. I’m lucky I have only lost the sight in one eye and my other symtoms are sensory but…this is why I’m fed up…my family keep making out there is nothing wrong with me. I’m struggling to find the right job at the moment but my family, mother, father, inlaws and husband make out that my symtoms are all in my head and I should beable to take on any job. This is just simply not the case, but I’ve stopped trying to explain to them that I get overly tired, I get spasms and cramps, I get the ms hug (the worst thing ever), dizziness, headaches, the list goes on, you all know the score! But because I don’t look physically disabled they are so unsupportive. I have two children and my parents don’t even help out ever, even when I’m super tired and my balance is off, and I mean never. My inlaws had the audacity to claim I’d made the diagnoses up, and my husband has no sympathy either, he’ll come home from work and expect a spotless house, meals ready, shopping done, bills paid, laundry finished, dogs walked, children’s homeworks completed etc etc etc. I wish they could be in my body for five minutes to realise I’m not able to take on any old job position, it’s hard enough trying to keep on top of the household chores. It’s so hard trying to convince people of this, even my doctors tell me that I look fine and that my tiredness is no different to anyone elses, claiming that everyone gets tired. Just plain fed up and needed to vent to a place that would understand. I have to keep telling myself that it’s alot worse for other people, it’s just hard sometimes that’s all.

Oh luv, this is so unfair…your family are the people where you should be safe, supported and helped out.

No wonder you are fed up. It is often the case that invisible disabilities go un cared about…for want of a better description, but I`m sure you know what I mean, eh? When you do find a job, you will be even more tired and they will all HAVE to help out.

About the children never staying over with their grandparents…well why not…as this is the norm?.

I am sad that even your husband doesnt see what is going on…doesnt he ever think his parents may want to have their grandkids stay over or go for days out?

Both sets are missing out on a joyous experience…I love having my grandkids to stay. The cuddles in bed are priceless!

Maybe if you did a bit less, they all will see you are not wonder woman, eh?

Let off steam here, whenever you need to

luv Polx

Oh, hun, I know what you mean. I have an office job for 30 hours a week and my housework doesn’t get done until the weekend. My symptoms are relatively mild but it’s still a struggle. I would imagine that losing vision in one eye makes life very difficult. How can your in-laws believe that you made it up or it’s all in your head?

This weekend the sun was shining and I woke up raring to go. I nipped to the shops for a few bits and by the time I had done that my legs were aching so much I needed a sit down with a cuppa. I was yawning so much and couldn’t get going again so ended up having a little sleep. So I didn’t get much done on Saturday

On Sunday I had to force myself to vacuum the house up and down and mop the floors just so it looked a bit better. My legs were still killing me and my bladder is misbehaving again. The house still isn’t tidy. I did make sure the kitchen and bathroom are hygienic but that’s it. Now I’m back to work and all I want to do is sleep. I’ve tried my usual leg stretches but right now nothing is helping them.

I’m off work for 2 weeks at Easter (4 weeks to go) so it will all build up until then and I will have to give the place a good blitz then. But FIRST I am having a duvet day when we break up because I know I will need it. That’s sometimes the only reason I stay working at a school - I don’t think I can cope working anywhere else now because I need at least a week off every 6 or 7 weeks.

I only have one son and he is 20. He does his best to help but men just don’t see clutter the same as we do. When I moan about the house he thinks it looks fine!! He will do the heavy lifting for me etc but he works too so I don’t like to put on him too much. I have learnt to be selfish and put myself first, when I need to rest that’s exactly what I do.

There is a leaflet available on this website about working with MS and at the back of it there are the contact details for useful organisations that can help you to find suitable work. Your loved ones would have to realise though that if you go to work then you will have even less energy to keep up with housework, dog walking etc.

I’m sorry I don’t have any answers for you but just wanted to say that I do understand.

Take care

Tracey xx

cricky you need one big massive hug as Polly says most of our condition is invisable. Me personally I dont want to moan as all it does is get me down, however if they see you get on with it they think things are ok. Truthfully they couldn’t cope with what we have to. Also they might not like admiiting the truth especially if you have been the one that has been there for them, you know some people can cope with people losing part of their health others it totally frightens them, i have a friend who can’t cope with the fact that I walk slower and get tired but I believe it is a fear of the unknown my other friend total opposite and treats me still the same.

the same friend has a son who suffers badly from IBS he started missing school believe due to the fact he was contstantly running to the toilet, his father has stopped all his privilages due to his’lying’ about school when i said the poor guy has probably embarressed in front of his mates, the same child has had an excellant report up to because ill from school. As i said some folk just dont get illness.

take care and you know you can moan to us as we understand

trish

What an insensitive lot…the MS Society in Northern Ireland, ran a MS awareness campaign and one of the quotes was “you have MS, but look so well” to let people know that having MS doesn’t automatically make you look bad…education is the key…

I know it’s been a while since I last visited but I thought I would send a belated thank you for your replies. Things at home have changed for the better and the worst. My husband has become more understanding of my condition which is a huge weight off my shoulders. Sadly though I haven’t spoken to my parents or in laws for many months. I’m usually the one who calls in or phones them to see how everyone is. I decided that maybe this should work both ways and stopped contacting them in the hope they may see that the phone and visits are one sided. I haven’t had so much as a phone call from my parents or inlaws. My MS nurse gave me some good advice, she said “you have to start putting yourself first, pace yourself, even if that means loosing friends and loved ones in your life, if you decide one day you want to scream out loud, then do it”. I’ve decided that if my parents call, then great, but if they don’t, I’m just going to focus on raising my family and keeping well. I’ll telephone them every month to see how they are instead of every week, they are very active people so I guess they are busy with their own lives. As for my inlaws, I’ll leave that up to my husband to concentrate on. On a brighter note…I’ve been reading the latest research on Ms on the Science Daily website and there is some very rapid and promising results on research being discovered. God bless xo

Hi new to this forum bit late i suppose.

In August the womaon of my dreams passed away from a kidney infection complicated by M.S. I was and still am devastated. I have recieved no help or support from anyone including my G.P who asked what do you want me to do? We were together fo 17 yrs she had M.S for 12yrs.

To make matters worse her son made a mess of getting her to the chapel of rest, the funereral was a not a tribute to her, the reception was a cheap and nasty affair. To make things even worse despite a will which left everything to me he decided to contest with a pack of lies made up by his girlfriend who witnessed the will. I am so broken hearted I dont know to go on I did contemplate takijng my life so i could be with her again but if i did that her lying son would inherit eveything so thats not going to happen…I know i will get over it but i need to pour my heart out to somebody but who i dont know.

I will read through the site and hope i cand find some answers

Mountains, I was just about to leave reading this thread as it began in 2014, then I read your post at the end and wanted to send you big hugs. So so sorry for your loss and the added complications.