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hello

Hi everyone, my wife Erica passed away on the 11th of February due to infections. She didn’t have the strength to fight them. It was so peaceful and my brother and I stayed with her in the hospital till the end.

We had the funeral last week and with the weather it was just a beautiful day. As for me I cannot understand how this condition doesn’t get the public awareness, something needs to be done.

We had so many plans and just wanted to enjoy life but after having MS for just over 9 years that was all taken away.

Hello hun. I am sorry to see that you`ve had no other replies to your post.

Please accept my sincere condolences on the loss of your dear wife. My heart goes out to you.

Where you her carer and for a long time? If so, then you may be finding yourself with little to do and feel lost.

That feeling ill gradually reduce, as you find other things to fill your time.

You mention the pubic not being as aware of MS and it`s problems as they ought to be.

In my own experience, they have heard about MS, but certainly have little or muddled ideas about it.

The best way to correct this is to be as open as you can about your wife`s experiences.

I hope time heals your pain and you find peace again.

luv Pollxx

thanks for the kind words.

I had been Erica’s carer for over 5 years we had been together for around 20 years. Erica was DN some 10 years ago which they think may have been triggered by her mother dying very suddenly. Her twin brother was DN with Celiac disease after their father passed away in the mid 90’s and the specialist was very interested as both conditions are attacking the body from the inside.

We went on to Rebif as soon as we could with the help of our MS nurse in Surrey and had some good results, she might get a problem with her hand or foot but mostly it would recover to around 90% use again, but when we moved from Surrey to Lincolnshire some 4 years later we had to take a break while we moved as it was a different area. it took at least 7 to 8 months to see the specialist/MS nurse and when we got our appointment he said it wasn’t worth going back onto rebif and in the mean time Erica had a couple of relapse’s and lost the use of her legs and right arm and then her voice went and she would have problems with swallowing.

We had some very good carers who would come in 3 to 4 times a day and district nurses who would see Erica 3 times a week and all helped me lots and if I’m honest I think we have been doing Palliative care for around 4 years as Erica was confined to bed and chair with this being all under continuing health care with social services, I would sort out her dinners and drinks which by now was mostly soft foods and thicken drinks and I would by now be feeding her.

After a few more years and more UTi’s brought on by many failed catheter’s which in turn lead to fits it was all to much. and we lost Erica she always had a smile on her face and we tried to do as much as we can.

Hello chelsea52, how are you today? I’m trying to think of something positive and uplifting to say, but I don’t know you or know what a terrible loss you must be going through so can’t say anything that doesn’t sound a bit empty really. Just wanted you to know that I was moved by your situation and hope you can find something to focus on to get through, although your definitely allowed to grieve so don’t be too hard on yourself.

Have you done anything fun today?

Least she is no longer suffering . This illness is totally debilitating distressing I have lived with it for over 20 years I’m only 35 and the pain fatigue and lack of quality of life . I wouldn’t wish on anyone . If I didn’t have children I would rather be dead than suffer like this everyday of my life . I’m not meaning to sound all dor and gloom but that is the reality . Least she is in peace now . I hate to think how much longer I will live with it . I could go on for years and it’s just no life at all . I look at my children and it makes me so sad that they have to see me . Physically and mentally deteriorate . When you have ms you know when the dehydration is coming mentally you lose it and physically it’s absolute distressing to think what you used to be able to do and now what it’s taken away .

Hugs and love

So sorry to hear about the loss of your wife Chelsea52. I hope you are being kind to yourself and have good people in your life supporting you.