Support of family and friends

   I follow MS Australia as this is where i grew up and still see it as my second home. An article got my attention. The government now welcomes some positive outcomes for people with multiple sclerosis (MS). One that got my attention was this: Acknowledges the important role of families,friends, and carers of people with multiple sclerosis. This is now a fact by the parliament.

 With interest i was reading this and thought to myself,my god,i have fallen out with both sides of our family a few months ago and not by choice. It's pretty sad to say that we no longer have a family network at all . Mind you when we did have contact the support we received was basically a big zero. Both sides of the family did not believe i had MS,or that i made it up for my own benefit to get what i want. If only that was true of not having MS. Unfortunately there is nothing worse then being sick and struggling from day to day and always being in pain,and your family does't believe you. The constant looks i would get if i asked them to get their own coffee or a little help. Again,there is nothing worse then the look of "yeah right i don't believe you".
 Having MS is already so difficult and then to get family to not support you is really sad. I say sad because it does make me sad. It doesn't take much effort to help someone or just have some empathy. But to not belief and trying to hurt the person that is sick,is a really evil thing to do. I am sorry but there are no better words to describe this.

 But it's not all dread and gloom. I am actually very lucky to have great support from my husband and two sons. I don't know where i would be if i didn't have their support.So yes i am unlucky to have no support from both sides of the family but very lucky with my own , my husband and my son of 20 yrs and other son of 18 yrs.
 My husband cooks dinner every night and does all the finance and paperwork etc and the list goes on,his support is there 100% all the time. My younger son helps with food shopping but the most important is his kindness and empathy and understanding. My oldest son does his best,but living in Australia and doing university he has his own life. But he has also been a support for me when he lived at home and now living far away,he still shows that support.
 To be honest, i am a lucky woman.

 I cannot stress enough how important family and friends are to someone living with MS or any kind of chronic illness. It can be such a lonely and isolating disease that being surrounded by loved ones is so so important.

 Although family and friends are important,i must stress that if you do have family/friends that make your life hell instead of support,i would take a break from them. As stress is a big No No for MS,it also makes us sick or attacks our immune system causing it to flare up,or in other words attack.

 When i did have contact with the family,they were no support at all. In fact they only caused drama and stress and resulting in a MS hug for months. This is a tight band around your torso and pressing really hard causing it pain and discomfort. The ones that have MS certainly know what i am talking about. For the ones that don't,they can google MS hug and realise this MS hug is a monster.
 To have family causing so much drama and stress it's a blessing to have no contact now and remain stress free. For now i am happy  not to have any contact for a very long time unless they show some empathy or treat me with respect and belief that i have multiple sclerosis. If they cannot do this,then they are better to stay out of my life.

 All the best to my MS readers and hoping that you have the support that you deserve :)


Mascha

Catching that good day..........

 Moving 5 years forward after my diagnosis,there seems to be less and less good days. When i mean good days i mean pain free and totally pain free. This is the thing with MS it's just so unpredictable.
 we often know when we have pain,or can't move our leg too well,or vision issues etc the list goes on and on. But when we have a pain free day i don't always notice until the end of the day, when i think "hang on" i have had no pain today "what's going on ?" They sort of surprise us,or let me say myself. I have had no pain free for a pretty long time and i couldn't even tell you when. I haven't done anything different to enjoy this pain free day? I track down my activities and go through my day to see how i deserved this good luck. Well NOTHING new?? Did i relax more,eat better,sleep longer?? All of them are a NOPE. Nothing new for me to have this pain free day.

 I find myself sitting on the edge of my bed and just wonderring "is it really true"?i need to enjoy my evening more as god knows what tomorrow will bring. But instead i find myself relaxed into bed and watching TV and planning my next day. Now what's pretty weird is when i say planning my next day. Having MS is almost not possible to plan your day as we never know what our day brings. But yet feeling my good old self and having no pain i am planning ahead. Oh what a good feeling this is,being a little bit normal.

 So i wake up feeling not too bad and trying to get ready for my day.I had planned to walk and do my errands which  seemed fine last night when i went to bed. Said my goodbye to my husband and walked direction to the shops. Oh yes did you know i love shopping too. I arrived after my 10 min walk and to my surprise my leg was aching. Considering i felt so good yesterday i think i had over done it. Well this didn't stop me,and i did partly what i had to do. Soon after i knew i wouldn't be able to walk much further :( and decided to forget what i had to do,and yes i did buy myself a dress considering i was standing right a front of the shop. It didn't require much walking except a few minutes in the changing room.  And so i went back home with pins and needles feeling in my leg and a few stabs here and there and sat on my sofa to recover.

 I just couldn't understand how the day before i had cleaned the whole house, even managed a walk after with my husband,and the next day BANG in pain. One conclusion is that i over did it and i pay for it the next day.

 It's funny how i notice when i have pain but yet it takes me a lot longer to notice when i have a good day. All i know is that when they do come up,good days,we need to enjoy them!!

 Thumbs up for pain free days!!!!!