I was diagnosed with relapsing MS in May so it is very new to me and I am still learning how to cope and adapt. I was given steroids from my neurologist when I was diagnosed and they brought me out of a 6 week episode. I was then under the impression that it would hopefully be six to nine months before I had any further symptoms.
Last week I started feeling like I had flu and my dizziness and fatigue stopped me from driving and being able to work. It felt like I was going into another episode.I was suffering with numbness in both my legs and I also experienced the MS hug for the first time which was very scary. My MS nurse was confident that I was suffering from a virus or infection until I informed her that the numbness was worse this time and effecting more of my legs than before. My symptoms have eased a little and I have come back to work today but I could quiet easily sit here at my desk and cry. My tiredness is very extreme today and I have a lot of back pain. Work is the last place I want to be but I can not afford not to be at work.
Due to the amount of time I have had to have off in the last 18 months I am no longer entitled to sick pay. So when I am off I am only entitled to SSP.Since diagnoses I have found one of the hardest things to cope with is getting back into my work routine.
How do people stay in full time employment when they feel like this? I feel very trapped as I need to work because quiet simply I can not afford to have another day off this month.
So my question is, is there any benefits I can claim to top my wage up if I do have to have a month off or even a week?
It feels awful to not have the option to stay at home if I am to dizzy or too fatigued to get to work, how do the people who have no family or support cope finically if they are off work and can’t claim benefits?
I know my message may seem very money orientated but I have no control over what my MS does but I am trying to hold on to the control I have about paying my rent and feeding myself whilst staying as healthy as possible.
Any help or advice would be much appreciated.