Tough month

In some ways I feel so proud about how far I’ve come. I’ve been lucky landing a new job quite quickly and having my parents to support me financially during this tough time. Though my MS just seems to be going further and further down hill. I feel that I am constantly trying to do anything to lessen my relapse rate but nothing seems to help. A week tomorrow til my first MS appointment is the only thing scraping me through. Yesterday and today have been quite teary days both at work and at home, and it’s difficult trying to learn new things at work and not embarrass myself in front of new colleagues I don’t know, when I feel the way I do.


My whole body hurts, I can’t concentrate, constantly tired and feel so down and alone.

Rant.

ms-is-not-the-boss-of-me:

grimmi:

I had landed my dream job in a great company doing something I adored. I got excited about going to work and had a great time learning new things. They were so understanding of my MS and said they would always support me and make reasonable adjustments to help me, whether that meant I had more…

Girl, are you US or UK?  Right now discrimination suits aren’t going anywhere very fast in the US. The American’s with Disabilities Act seems to be one of the casualties of the political times.  The enforcement arm seems to be lacking funding.  Maybe the process is different in the UK, but I don’t know.

Anyway that said, wrong is wrong and companies will continue to not worry about treating a disabled person unfairly as long as they aren’t made to do otherwise.  Right now you have time on your hands so become a politely squeaking wheel asking for answers.

Most corporations will have an internal employee dispute support service group.  This is meant to avoid lawsuits.  Your former HR department should be able to provide you with the contact information if you have that option. If you were working for a privately owned firm it may be easier to talk to someone up the chain about your firing.

Do you have documentation where they acknowledged that they were willing to accommodate your disability?  Do you have documentation on the work you did do for them so far that supports your value as a good employee?  By chance can you qualify in dollars or pounds the money you brought into the company through your work for them? Do you have examples of your work?  Is there someone of authority in the company that is aware of the quality of the work you accomplished, and that may be willing to go to bat for you?

If after you begin asking questions they comeback offering a financial settlement to make you go away, make sure you don’t sign anything without receiving a letter of recommendation that acknowledges your positive work ethic. 

I’m from the UK so I’m not entirely sure of my rights or anything, I’ve read so much but it’s a lot to take in and to understand properly.

I tried fighting my case as they did it over email and I tried to dispute it but my manager just kept saying no but if I wanted to dispute it I have 10 days to write to him formally for him to re look at the case. I’m just not sure what good it will do disputing it with him again as it is a very small company he is the MD, HR and everything in between.

I never got anything in writing from them, when they found out my diagnosis I just had an informal chat with my manager in his office and he was just asking how I was doing and what they could do to help. I wish I did have something in writing as I feel like I’d have more of a case :/
The other difficulty is that I was only there for 2 months and because I’m in my probation period I guess they thought sacking me was the better option if I was going to be off ill more than the rest of my colleagues. All of my colleagues were shocked to find out that I had been sacked as they said I was getting on really well, but I have no idea if they’d be brave enough to stand up and support me.

It’s just a real shame that I loved the job so much and now being unemployed is making me feel more depressed. I think I’m just going to have to take it a step at a time and hope I get somewhere. I just want them to accept that I wasn’t a dishonest person and that I was genuinely struggling and not pulling a sicky. We will have to see :/

How did my life get so messed up so quickly?

I had landed my dream job in a great company doing something I adored. I got excited about going to work and had a great time learning new things. They were so understanding of my MS and said they would always support me and make reasonable adjustments to help me, whether that meant I had more time off ill or whether I needed to switch to part time they were great.

Then I went to a cheer comp this weekend in Nottingham which because of my LP recovery, I missed the last competition my squad did. The girls put me in the routine but only for the dance as they knew how much I wanted to compete but maybe how unwell I might end up being. The Saturday was great - did our routine and had a great day. On the results day, I ended up having a relapse on the Sunday and wishing I was back home to recover. I returned home and began thinking that I needed to go to the Drs or back to my consultant to see if they can hurry along my treatment.

Apparently phoning in sick because of a relapse when I had been away for the weekend was unacceptable and I got the sack. Completely out the blue from nowhere. They say they can’t trust me and now I’m unemployed, with MS and the fact that I got fired from my last job - it seems unlikely I’ll get back into employment.

I’ve been told I should appeal for it in line with the disability discrimination act but I have a feeling it could be a lot of aggro for no result.


I’ve never felt so down about anything in my life. Why me?

ronbeckdesigns:

march: multiple sclerosis awareness month
i was diagnosed in April, 2003. Please feel free to ask me anything about MS and or my condition. It’s important that we support on another, talk about it and ask questions.
please re-blog this to keep the awareness fresh in others minds.
With or without MS, educating yourself about it is paramount. - ron beck

ronbeckdesigns:

march: multiple sclerosis awareness month

i was diagnosed in April, 2003. Please feel free to ask me anything about MS and or my condition. It’s important that we support on another, talk about it and ask questions.

please re-blog this to keep the awareness fresh in others minds.

With or without MS, educating yourself about it is paramount. - ron beck

(via the-raven-nevermore)

ms-is-not-the-boss-of-me:

grimmi:

Recovery from lumber puncture is taking far too long! Can’t believe I’ve been signed off for another 2 weeks - not ideal with it being a new job.

Got a letter from my neurologist with what they have written to my gp saying. I wish it wasn’t all written in gibberish as I have no idea what they are…

1st — Happy Valentines, hope there was chocolate involved

2nd — Did you see this information on the National Multiple Sclerosis Society site (address:  http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/medications/carbamazepine/index.aspx)  It may answer some of your questions about the Carbamazepine treatment.

3rd — When I had a spinal, I had to go back for a “blood plug” a few days later  because the needle hole didn’t close.  Is that your issue?  If so ask for a blood plug. I was 100% the next day.

Thank you! Same to you :)

I’ll have to take a look at that site thank you for the link! It’s funny because before my diagnosis I guessed that it might be epilepsy so not sure if they think that medication will help me because of my symptoms (will probably make sense once I’ve read the info from that link!)

My neurologist is really reluctant to give me a blood patch and would prefer for it to heal with lots of lying flat :/

We unite, you and I are right tonight..

Recovery from lumber puncture is taking far too long! Can’t believe I’ve been signed off for another 2 weeks - not ideal with it being a new job.

Got a letter from my neurologist with what they have written to my gp saying. I wish it wasn’t all written in gibberish as I have no idea what they are talking about. There has been mention of Carbamazepine treatment which from reading up online, seems to be a medicine used in treating epilepsy :/ not sure what that is about!

Recovering at Tom’s house this week has been lovely as everyone’s really taken my mind off things or just has conversations about Ms in general which has been quite interesting. So nice to see everyone be so kind and supportive.

Only downside is that I have to wait another week til I see him again then after that… Maybe a month? Distance sucks so much especially when my worries and thoughts go crazy cos then I just go into lockdown.

Maybe when I feel more recovered from LP I won’t feel as down and still got lots to ask and learn about!

peekies:

2012 was definitely one of the worst years of my life. I received a diagnosis that changed my life forever. Last year I made a review of all the good things that happened in 2011, this year, honestly, not many good things occurred. I don’t want to sound negative or pitiful, no. But this year has…

I guess a positive that has come out of this past year is the fact that I no longer think I’m crazy, I know now that my symptoms are real and not ‘all in my head’. That in itself is alleviating.’

 

Such a good feeling and I am so happy you are getting the help you need. It’s always a relief to know that you aren’t going crazy and that people can help you (I definitely felt like I was the only person going through what I was and like the Drs said ‘maybe it’s in your head and you want something to be there’  - most unhelpful!) - hope 2013 is a better year for you :)

 

Rachel

 

the-raven-nevermore:

grimmi:

So on the 07/02/13, I was diagnosed with MS. Originally this blog used to be for writing irrelevant day to day accounts of average university life, but now I feel like I might be starting some sort of crazy journey with everything - I thought it best to write things down here, to make notes of…

I was diagnosed Oct 5, 2012 feel free to send me a message or ask me any thing. There are many people out there that are going through the same journey.

That’s a very kind offer thank you :)

What type have you been diagnosed with and how did you come across it? Mine all stemmed from weird ‘episodes’ I’ve had since a knock to the head about 4 years ago - which is odd considering everything I’ve read about MS says that accidents and falls to the head have no correlation to MS whatsoever? 

I hope you’ve been dealing with everything ok :) 
Rachel 

What doesn’t kill you makes you stronger..

So on the 07/02/13, I was diagnosed with MS. Originally this blog used to be for writing irrelevant day to day accounts of average university life, but now I feel like I might be starting some sort of crazy journey with everything - I thought it best to write things down here, to make notes of things I need to ask consultants at appointments about and all that jazz. Also thought if theres any tumblr users out there with MS that maybe they can shed light on things that I am unsure about..

'I just wish I knew why I kept having my moments of feeling strange, it's affecting everything I am trying to achieve or enjoy. It is turning me into a different person.' (26 Aug 2011|11:18pm)

Taken from a online journal I used to write when I was younger, I guess this may have been my realisation of knowing that something in my body wasn’t right. That I needed help, and after going through therapy sessions and being prescribed different antidepressants with no positive outcomes or solutions I went back to my GP in order to get the help that I needed. It felt like every day was a struggle and I wasn’t prepared to carry on fighting it.

After having MRI scans, blood tests, lumber puncture, EEG and Evoked Potential studies tests done, they have confirmed it is Multiple Sclerosis. Something that attacks your nervous system, this was the last thing I expected them to diagnose me with, and I think the consultant wasn’t shy in hiding the fact that he, himself - was also not expecting that outcome.

The one silver lining about this is that although MS sounds scary and I still do not know a great deal about it, he believes that I have the relapsing/remitting type - which is the least aggressive of all the types of MS I have seem to come across when reading up about it. Family and friends seem to react badly when hearing the word as the first things that come to their head are serious things like ‘wheelchair bound’, ‘paralysed’. I guess it’s a natural reaction as that was my reaction to it, and to be fair I am still a little freaked out that things like this are possible in the future. I think I just need to hold onto the fact that I am young, fit and healthy - and finding out about this now will hopefully prevent me being in situations like that when I am older.

I have a lot more appointments to go through and more consultant opinions before I get the help that I’m after, but even though I am terrified - I am happy that finally people are taking my situation seriously and hopefully eventually I can get the help that I have been after for 4 years.

If anyone sees this that has been diagnosed recently with MS or anything, please do comment as I’d love to hear people’s individual stories and see how similar they are to my own.

Until next time :)