Hiya
Have just got round to opening todays post. Because I am a member of the MSS I have been sent their recent literature on the msfightback campaign.
They ask for £30 or any other amount that I can afford. I appreciate the need for research and it has to be funded somehow-I dont have the answers to solving that.
Whilst my point may seem insignificant to some, its something thats important in how I deal with my MS.
FIGHT.
The word immediately puts up barriers and makes me think of battle and a huge amount of energy being involved.
I dont have the energy or mindset to fight anything or anyone-especially myself! MS is now a part of my life-albeit an unwelcome permanent visitor. I understand why the word ‘fight’ has been used. It sounds determined and a force to be reckoned with. I can understand friends and family wanting to ‘fight’ on my behalf (and indeed professionals and researchers etc) but for me, the person living daily with the symptoms of MS then I dont think its beneficial for my mental health to focus my thoughts and energy that I do have on ‘fighting’.
Daily I focus on what I can do-not what I cant. I enjoy living my life despite the restrictions that have been placed upon me.
I accept that my life isnt how I would have chosen for it to be but its the dealt hand that I have to deal with. I will continue to live my life with a smile on my face and enjoy. Thats NOT a superficial coverup smile but a genuine appreciation of what I do have.
So MSS, I dont have £30 spare in my purse-sorry-but I will continue to purchase my monthly LDN as it does assist me in getting through each day. I am aware and appreciative of what the society does in raising funds and awareness but as a person with MS, I hope that it will understand that I want to focus on living and trust that one day they will find a cure for future generations.
Ellie x
hi ellie
im with you on what you say they target the wrong people to get there much needed funds like you i dont have any spare casdh that i can give im already a member and give when i can.
it is quite insensitive to do mail drops like this to those already with ms.
mss come on i started a topic last week about the media portrayal of ms and ive seens nothing even discussed with you about change. most people with ms are already struggling with finances there must be other people you can try to target to get the financial help needed.
hope your ok ellie x love moo
Hiya Moo
Its not the letter or the campaign that I have an issue with-though you have raised fair points.
Its the term ‘fight’ I object to as ‘fighting’ MS when u already have it is a losing battle-its acceptance and coping that those with MS should be concentrating on.
Brill sunny day here so all is good!
Ellie x
I agree with both of you - I also do not have £30 to send into that black hole for research funding (they’ve already had a hell of a lot of money, what have they done with it?). I give a donation every month, I cannot afford to give any more money. I deal with MS and it’s effects day to day - some days are more of a struggle than others, but nobody is going to do it for me.
The begging letter went in the recycling bin.
Luisa x
-I dont have that sort of money spare either. Wonder if the powers that be and indeed the mss know how us ordinary folk manage from day to day. Its hand to mouth and yes we are frightened of turning on the heating for fear of a bill we cannot pay.
I think a mailshot should be sent to those who need a history lesson in philanthropy - maybe with a hint of their moral obligation to help those less fortunate, so the ‘fightback’ can begin in ernest without pain in their pockets.
I do what I can, but alas I can do no more, the recession is taking its toll on those on limited income - namely the ‘disabled’ and those on low income. Get real, life costs, so does caring, so does disease and so does disability and living with it on a daily basis is no fun. As for social outlets, if theyre free yes, but if they cost forget it, we are already imprisoned by our daily bread.
bren
x
Hey
Thanks for the replies. I know the MSS are asking for financial support in very difficult times. I think they may be between a rock and a hard place when it comes to going ‘the right way’ to get it-how do they know who has extra money and who doesnt-tho I fully appreciate what you say Bren-times are tough for most of us with MS.
My main issue is with the word ‘fight’.
It suggests the wrong mindset for those of us alreading living with it. It implies winner and loser. Thats an awful way to look at it in my opinion-we have already ‘lost’ cos we have the blasted illness! That doesnt mean that our life is over-its time for an unexpected review. For us to manage our MS on a daily basis then I believe that our thoughts and feelings go a long way in helping us to do this. Acceptance does not mean giving in-far from it. I have found that accepting I have MS has benefited me (mentally) rather than a farce of a fight.
Ellie x
Hi Ellie
I know what you mean about use of the word fight. My wife was telling me about something she read in a book once. It was talking about how in nature, things heal best when they feel they are protected and safe. An example it gave was if a plant has been damaged, it won’t self repair whilst it thinks it’s still in danger - that could be a waste of energy. So it will only repair itself when it feels safe again. So using language like this may have a negative affect on us.
I appreciate that at times it may be appropriate - I know for me there’s been times when, mentally & emotionally, I think I’ve needed to have that mindset. But now, like you, I’m in a place where accepting it feels like a much more empowering place to be. And as you say, that’s being defeatist or giving up on life. It’s just now, I use my energy on choosing life - those things that energise me a and I feel grow me as a person.
Hope you’re enjoying a fruitful peace!
Dan
Dan
You are so eloquent! Yes-you understood my ramblings and what I was trying to say-thanks.
The other posters have valid replies re the money troubles but it was the wording (fight) and how those with MS cope with their thoughts regarding that diagnosis that was my concern-fighting is definitely not the way to handle it and I just find it hard to take onboard thats whats being encouraged.
Thanks again for your reply.
Ellie x
Hiya
I want to share with you a quote that sums up what I was originally trying to say re fighting…(any illness)
‘Amazing, vibrant and funny…. the teenager who has stopped fighting cancer to enjoy the rest of her life.’
Its taken from a website called Josies Dragonfly. Easily found in a search and you can read her story.
I have done what I can for this charity for a few years now- I am not in any way directly connected-it put alot of MS stuff into perspective for me when I was made aware of this wonderful charity (its base is fairly local to me)
The story that always brings a tear to me is the girl with the designer shoes-she left them to her sister.
If you are going to have a look at the site re Josies nature and spirit then please dont blame me for any tissues that you may use! But I hope that it helps some of you (as it did me) to come to terms with having this MS malarkey.
Ellie x
dan
i have pinched your example of the plant and used it several times recently and folk have said-ah, i see what you are saying now-it makes sense.
have a happy day all.
ellie x
Ellie,
l understand Dan’s analogy about the plant - but here is another one - l have several plants that have self-seeded and are growing in the most hostile of conditions. Cracks in brickwork/blockpavers/concrete slabs - because they have no fertile soil - in fact no soil at all - no water - the restrictions make them all the more determined to thrive and blossom. l am talking about Buddelia/Foxgloves-
Valerian/ Snapdragons etc - l won’t pull them out as they have struggled to grow in these conditions and deserve to be left- and l think l have been doing the same - l struggle all day long - and l do feel a sense of achievement when l have managed to do
the almost impossible. l might not be exactly ‘blooming’ more ‘blooming eck’!! There is a tall sunflower growing out of the chimney of the village pub as well.
Just returned from a visit to a new GP - l decided to change doctors - l saw a lovely Norwegian chap - ‘YOUNG MAN’ who straightaway wrote me out a repeat prescription for Sativex. Have to wait a couple of days for the pharmacy to get it. This is after my previous GP - who had prescribed it for the last 2yrs - was stopped by a senior partner.[ l asked the other practise first whether they would prescribe it before changing] So things are looking up!
F.xx
f
love what u say re comparing urself to flowers.
i love sunflowers! in fact, sent my friend some this week cos she says they remind her of me.
ellie x