3-4 Weeks post - the garden fence needs painting.

So before it gets too cold outside I needed to paint the fence to protect it for the winter. My parents had mentioned they would get it done and I began to realise if I wasn't going to do it, it probably wouldn't get done this year now.

So I set myself the challenge while the forecast was predicting dry days, it was going to be hard, but i needed to embrace optimism!

It took enough energy just to get dressed to go outside in the cold, but i did it!

 

I completing painting the fence over 3 days spread over 2 weeks due to rainy days after my first 2 days, needed to wait to do the last 3 panels!

 

Anyway this was the move forward that helped me believe i was able and ready to get moving nf trying to get my body moving again. After it I was knackered and  needed recovery period the next day but you know what they say 'no pain, no gain'.

 

Week 1 post update_blog catch up

Week 1 post: The first week at home I took resting to a whole new level. I didn't want to push myself into exaggerating my MS so I just rested all week, I did get up every day, had a breakfast and a bath and got dressed into another set of pyjamas! I did have transient worsening of some of my older ms symptoms, I got tingling in my legs  after doing nothing but this is usually only something I get when I've done a lot of walking / standing that day. I had a short attention span and was really easily annoyed by any little thing and frustrated almost instantly if something wasn't as easy as it previously been (I think this is just an exaggeration of my usual personality maybe). The rash stopped coming back on day 4 or 5.

Day 6 & 7 first weekend after Lemtrada

Friday evening I watched the telley, fell asleep in front of the telley and finally made it back upstairs to my own bed for what felt like the most greatly anticipated night's sleep ever, tranquillity at last! So I was glad to get back home and to sleep in my own bed in peace, although I can't deny that for a few seconds I wished my bed still had electronic sitting/reclining functions and somehow I was a little nervous to sleep alone (I realise this was silly because the worst that could happen was to get the rash back, which I expected anyway, then I just needed to keep up the chlorphenamine levels, simple!)

 

above is a picture of the rash I had just before I went to bed, it was unusually just on my thighs?

When I woke up on Saturday I was surprised to find there wasn't a rash present at all, I did a quick body check and it was true, i survived the night, no rash to be seen and i felt quite good. I took the chlorphenamine to avoid the rash reappearance, later that day when the second dose of cholophenamine was due the rash had started to come back quite rapidly, showing me that I needed to keep on top of the meds, the rash wasn't over and done with yet. So I took 4mg chlorphenamine every 4-6 hors whenever i saw a few of those spots come back.

Sunday didn't feel so good, I was finally feeling the comedown from the IV steroid, IV hydrocortisone and IV piriton junkie lifestyle that had helped me feel so good in the hospital. My legs felt numb and tingling and this was  unusual for me these days, I had done nothing and my legs felt like i had be standing or walking around all day yesterday. It took me back to feeling like I did before I even started taking Tysabri (bad times) 7.5 years ago. My neurologist had warned my MS could feel like it gets worse temporarily, but this was something i hoped i would get away with (over optimism).

Anyway the feeling in my legs passed and i slept it off overnight (to my relief). Not much to tell, i just rested. Here are some rash pictures from the weekend to make this a tiny bit more interesting :-)