Month: February 2015

MS in the press

~ grimdawgg ~ 5 Comments

Something that must be said before I ramble on, is that Bella is not being kind to me as of recent (what a bitch!). I have had a few busy weekends in a row which has led to my fatigue being pretty unbearable, along with some random body spasms, rubbish vision and generally feeling off balance and spaced out.
My work colleagues have noticed that I am visibly more wobbly around the office as well, with them joking that they are going to carry me back to my desk after walking to the printer (cheeky buggers!). No point in being a worrier though, I know I just need to relax this weekend which is exactly what I intend on doing! 
With this in mind, please be kind if this post makes no sense whatsoever 🙂 

I thought I would do this post as I have seen Multiple Scleoris mentioned in various forms throughout the last week. I will always remember seeing Multiple Sclerosis mentioned for the first time on TV, when Jack Osbourne appeared in the MS Society Lifeline appeal video on BBC1. It was inspiring to see someone raise awareness for a cause that I could 100 percent relate to in so many ways (he also injects Copaxone as his disease modifying drug daily, just like me!).

I am an avid follower of all MS related press articles, which in turn is helping me learn new information about this disease daily. I also get some strange sense of pride when I have people say things like ‘I saw this programme the other day and the person featured had MS just like you!’. If it is bringing awareness and understanding to others, then to me; this is a step in the right direction on a much larger scale.

With this in mind, here are my top 3 finds this week of media which has kept me feeling positive and feeling like a warrior:

The People’s Strictly for Comic Relief

Episode 1 out of 4 is on tonight at 9pm on BBC1 (I’m sure this will be featured on iPlayer as well if you miss it!) and features Trishna (volunteer from the MS society and MS warrior). Dancing, raising awareness and hopefully bringing in more donations for the MS society from this being broadcast can only be a good thing in my opinion!  

In Pictures: What multiple sclerosis means to me

I saw the link to this article on the Shift.ms twitter page (another great social network for MSers!) and it really caught my attention. Photography was my BA hons degree choice and it has been a long time since graduating in 2011, where I have seen a series of photographs that instantly struck a chord with me. All the photographs were taken by MS sufferers and it is putting a positive twist on a nasty disease. Can’t get more warrior, than that!

Awkward Bitch – My Life with MS

This was the first book I ever read about MS. I remember being in waterstones and browsing the various selection of books surrounding MS and neurological conditions. All I saw was factual and quite frankly boring looking textbooks on the shelves. Then I came across this and I knew this would be completely up my street.
Marlo Donato Parmelee writes honestly about her diagnosis of MS and how it affected her life. Although in parts this book can be quite hard hitting, it is bound to make you laugh and smile as well. I would definitely recommend this is a must have, for MS warriors and their army of friends and family members. When my vision and concentration starts to behave itself again, I’ll be re reading this.

Have you seen your invisible illness mentioned anywhere recently? Have you got any recommendations on similar articles? Maybe we aren’t so invisible anymore..

Working with MS

~ grimdawgg ~ Leave a comment

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Why should anybody have to justify their illness or disability?

I am currently trying to battle exactly this and I will not pretend that it has been an easy ride. Most of my energy in the last month, has been put into trying to express and define my daily struggles in writing in a professional manner. I am left feeling slightly let down that my employer, who was once very accommodating to my needs; has now given me a stage one formal warning for my
absence relating to my MS.

Unfortunately this is not the first time that this has happened to me, the last time ending in a formal dismissal from my workplace. Having just being diagnosed with MS, this may have been one of the biggest challenges I have faced so far in my MS journey. I was in MS limbo land and unemployed; needless to say the stress caused `Bella the MS bitch` to give me grief (brilliant – not!).

The one saving grace with this experience, was that I wouldn`t let the `big dogs` get the best of me ever again. Just because I have this chronic illness, disability, pain in the backside (whatever you want to call it!); this does not define me as a person. I refuse to be bullied out of working or being independent in any situation. If anything, each time it just makes me stronger and in my opinion they have lost out!

Here are some of the tips that I have learned along my way:

Document it

For every appointment, prescription, symptom or clinic letter you get; KEEP IT DOCUMENTED! I now have a lovely `MS folder` with all of my medical history for me to refer back to if I ever need to. When you have been told various scientific jargon from your consultant that you know damn well you will never remember, you now have it to digest and deconstruct at your own convenience.

Join a Union

I cannot stress how important this is! When in employment, your voice maybe overshadowed by people who have zero understanding of disabilities or illnesses that you are dealing with. Had I been part of a trade union in my previous job, I would have won my battle with them. At that time I was not a member and did not have the support that I needed. Trying to go through an employment tribunal was very stressful and was causing my health to worsen so I gave up the battle to get my voice heard. Having learned from this, I am now a member of Unison who have been brilliant to me. Their knowledge on equality law and employment adjustments that should be made for me is amazing. They are the booming voice that make companies think twice before doing something unlawful and just plain stupid! Sometimes just knowing you’re right is not enough in the big wide world, so having back up is so important.

Seek advice from Occupational Health

If you have an HR department or Occupational Health, then request for a medical assessment be carried out. This can be helpful to give your employer a better idea of how to introduce `Reasonable Adjustments` to the workplace to ensure that you are being looked after and can continue to stay in employment. From specialist equipment, extra screen breaks or flexible working patterns; these can be introduced to help make your working life a little less stressful!

Know your own worth

Being a disabled employee should not have any bearing on your ability to contribute new ideas or strategies to help your company progress (even disabled has `able` in the word!). If a company is not willing to keep you in employment due to your disability, then they are simply not worth working for. Don`t waste your time, tears or health on it and move onto bigger and better opportunities.

Always remember if you are unsure as to which companies adopt a positive attitude to disabled employees, the `Two Ticks` disability symbol is something to keep an eye out for. This is a symbol awarded to employers who are committed to doing all that they can to help disabled employees thrive and stay in employment. Find out more information here: www.pluss.org.uk

What companies have made adjustments to help your disability or illness? Let me know in the comments 🙂