I have been checking the front door carpet every day for the last week waiting to see the dreaded white envelope landed there. I had it in my mind that a day or two after the MRIs were taken would be a bad thing as no news is good news, right? Day 3 no envelope – phew, day 4 no envelope, day 5 still nothing. Today…there it was…everything turns to slow motion, 6 days isn’t very long, it must be bad news if they are contacting me so quickly, perhaps there is something terribly wrong, what if there are more lesions…what if they have found something worse…what if it was all a dream and I imagined the whole thing ……then in black and white clearly authorised by the neurologist “this recent MRI scan of the brain and spine shows no new lesions and no enhancing lesions.” …..Wow….that’s good isn’t it?….ok it hasn’t gone but it hasn’t got worse……I retread it twice, three times, yes that’s what it definitely says! Oh happy, happy news, first I told my husband, then my dad and then everybody!
If there is one thing I have learnt over the last 12 months it is who steps up to the plate when it matters most. I have been truly blessed with friends in this life. They have realised the need for me to get away and have a break and how to help me achieve this on a limited budget so that I could indeed spend as much time with them all as possible. Not being a pessimist, but being realistic, at the speed this disease can consume some people, this time a year ago I hadn’t thought it an option that I would be walking and talking now. Luckily for me it has not moved that quickly in me this time and my heart goes out to those in who it does, those who wake up one morning and they are paralysed and those for example, who are wheel chair bound within a few months.
My family have obviously had to change their usual routines to accommodate my changing energy levels from operating at 110% to 40% some days. The children have been amazing at trying to learn that they now must help mummy as much as they can, get things out of low down cupboards and that I am not driving them here there and everywhere anymore so daddy does the school run and that I don’t walk as fast some days. Even some days when I was experiencing great pain they came and read their stories to me and drew me pictures. Rob has had to be my rock, help me remember when I forget, pick me up when I fall and try to understand the MS “fog” and funny moods I now get and hold the fort when I can’t get out of bed. My dear old dad in Scotland who is 85 speaks to me every week and does his best to assure me that “they have got a new cure” and not to worry.
The church can be commended for always remembering me in prayer and for helping us out with home cooked meals when my pain with cluster migraines was so intense I could do nothing but curl up into a ball and inhale oxygen until it passed. Somebody always rang me, somebody always visited and somebody always cared. They even understood one day I felt so ill I answered the door to them and forgot I was still in my pyjamas!!!
I don’t know what the next 12months holds, I hope for it to be as good as this year and that the tecfidera along with the painkillers will hold this thing off for as long as possible. Has any of the alternative stuff I have been trying to do helped alongside the drugs? The homeopathy, reflexology, healthy eating spells, exercising spells etc. Who knows, but it has kept me entertained! And I will keep blogging and posting what I get up to next, including what happens to the sewing machine………..
positive thought: live life and live well, have hope and be grateful