worried about my job.

Hiyaead everyone,

Ive not posted on here for a while,I was diagnosed in march with ppms,which was a shock as i was lead to believe that it was rrms,

ive sort of come to terms with it,ive a really good neuro who i see every 6 months and an ms nurse,so im being looked after or moniterted,what im worried about is my job,i work in a hotel waitressing,work have been really good,ive had a few bad falls at work,with my input aswell ive reduced my hours to just working in the mornings as that is all i can manage,i dont wait on anymore i just stay in the kitchen doing the tea and toast,as that way im not walking about much,

3 weeks ago i woke up balence was off,vision,couldnt lift my head ,couldnt feel my feet,i was hoping it would pass but it hasnt,i was signed off sick at work,luckily id had an appointment already with my neuro who put me on a weeks course of steroids and has upped my gabapentin,he said that when i finish the steroids i would know as to wether i was having a bad flare up or wether my ms has progressed,ive finished the steroids but then ended up in hospital overnight,im still the same 3 weeks on and have again been given another 2 weeks sick,so question 1 is is it my ms progressing? and question 2 im worried that work will lay me off,can they do that ? im so worried as if they do i dont know how id manage money wise,and mentally wise as these past 3 weeks have really pulled me down,im just so sick of being like this,i want to feel normal again,but then again what is normal,im currantly walking with a stick but because my balence is so bad ive been told to walk with two sticks,im not ready to give in to this horrible disease,

sorry for going on

sue xx

Hi Sue

Our really helpful member of our gang, Pat is having router problems nothing to do with MS I think your MS nurse or someone should be shouting Disability Living Allowance. I’m not an expert so I’m sure someone will pick up on this.

As for your MS progressing, it’s a bith of a disease and can be fucing awful to live with BUT we do learn to live with it, it’s not deadlyI’m using elbow crutches at the moment, they help with my balance not alot but they help. It’s not giving in it’s ‘enabling’ I also use a wheelchair not all the time…

We are the gang, this too will passM

Hi Sue Sorry that you’re having such a tough time atm. It sounds like you are having a relapse atm which people don’t get with PPMS. However, there is such a thing as relapsing progressive MS which my MS specialist mentioned to me in conjunction with my MS. Is it worth contacting your neuro to see if that is a possibility with you and to see if you can be treated? I may be totally wrong about this but perhaps it’s worth ruling it out?! I hope the steroids help and that you start to feel better soon. Teresa xx

Hi Sue,

Tree65 has given you a good reply.

I sounds as if there is doubt about what type of ms you have at the moment. It sounds as if you are in relapse at the moment which you would not get if you were ppms.

Generally speaking if you have ppms then the steroids will not be of much help and you will not see improvement from them. If you have improvement with steroids then it sounds like rrms.

Teresa is also correct about the less common relapsing progressive type of ms which you don’t hear much about.

The neuro is waiting to see how you respond to the steroids. Then he will be able to decide what medication you can have.

I don’t know much about work issues though - sorry.

Teresa (the other one! lol!)

Hi Sue,

The first requirement of any good employer is the health and safety of thier staff. Unfortunately in the environment you work in; with hot pots of tea etc. it is far from being safe; for you and others.

Look into the Equality Act and the Law it lays down to benefit you; http://www.equalityhumanrights.com/legal-and-policy/equality-act/

There are many hoops youur employers must adhere to before they can sack you; takes about 1 year of you being off sick.

You definately sound eligable for DLA; RING 0800 882200 ASAP as if/when awarded your benefit is paid back to this phone call. 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 £19.40 per year. The DLS give excellent free advice http://www.dls.org.uk/advice/factsheet/factsheets_download.html it is essential you get help.

Access to Work can help but to be honest I can’t see how they can when you have to carry hot liquids. http://www.direct.gov.uk/en/DisabledPeople/Employmentsupport/WorkSchemesAndProgrammes/DG_4000347

Good luck in whatever you decide.

George

Hiya all.

Thank you all so much for replying,i found them very helpful,the steroids didnt help at all,ive contacted my ms nurse so just waiting to hear from her,i am normally an upbeat person but it gets you down at times dosnt it?ive also found through having ms who are your friends,people who i thought were my friends have disappeared,ignorance really,its there loss as they have lost a good friend in me ha ha

anyway peeps take care and keep smiling xxx

Hiya all.

Thank you all so much for replying,i found them very helpful,the steroids didnt help at all,ive contacted my ms nurse so just waiting to hear from her,i am normally an upbeat person but it gets you down at times dosnt it?ive also found through having ms who are your friends,people who i thought were my friends have disappeared,ignorance really,its there loss as they have lost a good friend in me ha ha

anyway peeps take care and keep smiling xxx