On Thursday I went to see my neurologist with hopes of getting some answers and a plan for moving forward.
As you can tell by the title, we didn’t get any answers.
Until I have another relapse they will not diagnose MS. I can’t work out how I’ll know I’m having a relapse but there you go.
I’ve been home a week now and it’s been a big change for the whole family, not just us but my parents as well.
My mum has given up her free time for months and is now staying on a few weeks longer to help me get settled in.
It’s a very different experience from what I remember. It’s noisy, hectic, funny and frustrating all at the same time.
There are people coming in to help me (Snowdon @ Home), visits from Community Nursing teams (Lewis and myself), Lewis’ care team and of course Paul Adam Lewis My Mum and me.
It’s so nice to be home, back with my boys but it’s opened my eyes up to my limitations. I can no longer do school runs (some may even call me lucky on that front!), cannot care for Lewis – cannot change pads, draw up meds, comfort him lime I used to. Only way I can have a cuddle now is if someone hoists him on to my lap.
I’m constantly in the way in my chair and forever have people stepping over me or pushing me out the way.
I don’t mind so much as long as they say excuse me or ‘do you mind if I step over you’. Mum and Paul will just push me out the way which is fine, I don’t mind them doing it now I’m used to it. They need to do it to get to lewis or carry out a task that’s important.
I still feel like an alien looking in from space. My body is just useless and it’s driving me mad. I feel awful that my husband has to empty my night bags every day and deal with the not so nice side of some things. I’ve had numerous accidents since been home where I’ve miss timed my bathroom trips.
I’ve taken notches out of the door frames, I’ve spilled food all over the floor, I’ve dropped things for no reason at all and it all sucks.
We’ve kindly been given the money to pay for our front door to be lowered so that I can get out safely and get Lewis out easier. A charity call ‘Southampton Doing It For The Kids ‘ have been supporting Lewis for the past 13 months and are continuing to support him this year. They’ve hoped make things for Lewis so much easier which in turn has made things easier for me.
I guess it’s going to take time to adjust to this new life but I’m still so angry that #Transversemyelitis has had such an affect on us all.