Hi All, What a week why does doing something out of the ordinary knock us for six. Last weekend I went back to Bristol to see the gromit unleashed exhibition as been a few weekends back and was disappointed I had only managed to see 20 out of the 70 that were in Bristol. Walking took it out of me and should have hired the scooter and not listened to my friend. Should have listened to you guys. A lesson learnt the hard way. Went back with my sister and managed the exhibition great I never thought I would be pleased I needed a disability but saving the 6 hour queue has been my only plus since my dx. Also went to the aquarium after a long lunch getting plenty of rest. Took all the opportunities for sitting down. Felt ok was tired but not as bad as the previous visit. Had really early night. Took it easy for the next couple of days lots of resting and sleeping. Had booked an extra day off work to recover. Back o work Tuesday. These last 4 days at work have been my worst since diagnosis my output has been so bad. At times it has taken me over an hour to type a sentence. I have been working from home all this week so contacted my boss as feel guilty I haven’t done as much as I should have this week. He is so supportive just told me to log off and enjoy the weekend. He is moving on to pastures new soon and I am really going to miss him. I am feeling so frustrated at how this disease can control you at times and really punishes you when you do something out of the routine. I am 33 I want so much more out of life than going to work and then to bed and back to work again. I know I am still getting over my relapse that had in April and still can’t walk without crutches but it all has come smacking me in the face again this week and needed to let it all out of my head on my anger and frustration I am feeling. Going to do my first full 5 day week next week as well - having been using my annual leave for the last couple of months so only being doing 4 day weeks. I am going out tonight for the first time since dx into London with some previous work colleagues feeling quite scared at the thought of the underground but I backed out last time because i couldn’t face it. I don’t want the MS to win so made sure I arranged to meet someone at the station so we can travel in together. I will probably come back on my own as I am sure they will want to go on to a club, I used to struggle managing them before I was on the crutches but now know why I would get hit with the fatigue. Sorry for the long post. Hope everyone is well Enjoy the weekend Barney
hi ms owl
i know what you mean.
i’m paying for the weekend before last when i went to the festival at portmeirion.
but i won’t stop going and i dont think you will either.
Hi Barney Gotcha completely. But have a good night and then rest all weekend !! Xx And stay safe if you’re coming back on your own.
Hi Barney, I hope you have a great night out. It’s a shame that this MS is taking things away and one of the worst seems to be confidence. Frightened to do things as not sure how you will get home is just awful. Worrying about going to work as too tired to work how you used to and now a new boss to worry about too. Can you not reduce work hours to take some pressure off you? I don’t know how you manage what you have been doing as I know Rachael is fit for nothing, she showered herself this morning and it completely took what little energy she had, back to bed after it, how you and others on here who work manage to then drag yourselves out the house to work is beyond me. A well deserved clap on the back for your mental strength. I hope all goes well next week at work for you. Linda x
Thanks guys. Had a really good night and managed to stay out with the guys well I plonked myself in a seat and stayed there all night. People went to get my drinks - well coke as tee total. Itwas really good tosee my old colleagues. I know I will be wiped out for rest of weekend but will be worth it.I ccouldn’t do it on a regular basis but do now know I can manage as long as we only goto one bar.