So it’s #Msawarenessweek and my best friend and #mswarrior (no more hashtags from now on, I promise!) has asked me to write a little something about what it’s like when your bestie gets diagnosed with Multiple Sclerosis….
So anyone that knows or has ever known Rachel will tell you she’s a high flying, never stops, always doing something, energy filled machine! For years I’ve taunted her over her inability to keep still, joking that she has undiagnosed ADHD. So when she was literally forced onto her back in hospital last year and couldn’t walk, we laughed at how she was litetally forced to stop (laughing might seem inappropriate but we’ve laughed our way through every single thing in life , bad back & MS has been no different).
You’ve all read through the diagnosis period so I won’t go through that again as I’m sure you can all imagine how horrendous that was for all of us close to Rachel. I was scared, I cried and I bloody missed her so much! Not because I didn’t see her , I was at her side as much as I could be….. but me and Rach talk so much throughout the day we literally know each other’s every movement, every meal, every drama of the day, literally everything! I missed just being able to talk the usual nonsense to her all day, instead of every phone call being ‘what’s the latest? When’s the next MRI? What ward am I going to tonight?’. I felt like I’d lost my right arm.
When she finally got out of The Walton Centre and back into the real world, she was literally itching to get back to normal. Which filled me equally with relief and fear and I’m sure the others around her felt the same. Relief that she’s still Rach & still can’t sit still… but fear that she’s going to over do it and she’s going to end up really sick again.
So the year since the Dx has seen Rachel with more relapses than is definitely common. For me this has meant I’ve had a fast track eduction in MS and what it means to those who live with it. I’ve also had to fast track learn how to be the best friend I can possibly be, to someone with MS… so to any other #matesofMS (ooh look another hash tag slipped in! I’m so down with it) here is my advice to you;
1. Be there! … it sounds simple but Rachel’s hospital stay and the appearance of this third wheel in our friendship has meant I’ve truly learnt what this means. If your friend NEEDS a pot noodle, you take one to the ward. If your friend needs to phone you and cry and hate the world, you listen. If your friend needs a distraction then keep them busy and always keep your door open to them.
2. Take off the kid gloves…. I’m a natural worrier, so my first instinct is always to tell Rach to stop what she’s doing and rest. I now know all the ways she can tell me to ‘do one’ without swearing 🙂 Ive learnt now that absolutely nothing can break her, and the only thing that will stop her in her tracks is a hospital admission, so I’m certainly wasting my breath ha ha!
3. Stay positive… Until this last year I didn’t realise the abundance of negative MS stories that are in the press. I suppose we would just skim over them before now, but now they come with screaming loud headlines to us! Keep reminding your friend that not every MS story is the same and to look for all the positives around them.
4. But ….. sometimes it’s just rubbish and wallowing is ok. In this case cut the lemon for the gin (or your friends preferred refreshment) and listen.
That’s me for now! Whilst Rachel sets up her MS coffee mornings / wine evenings/ whatever, I’m going to set up a #matesofMS group where we can talk about how we deal with our friends suddenly wearing eye patches and support each other through the relapses as we are missing our right arms! (I joke,I joke! Rachel works the eye patch like an absolute pro anyway)