My Health

1. What’s Important to me .. • Being in control I hate it when my body doesn’t let me do what I • want to • Spending time with my family and friends, my mum lives next • door and I spend time with her everyday • Spending time messing about with my horse and dogs, ,l like to • look after them myself even when I feel unwell • Sweets and chocolate. I have a stash at mums! • My work – I need to so do something I enjoy and where I can • make a a difference • My computer – I communicate best by email and love internet • Shopping, chatting to my friends on facebook and café world ! • Clothes and having my “face “ on but not at weekends then • I am more likely to be scruffy and covered in mud! • I love music particularly live! I listen to lots of different things • Having my own space - I need to spend time on my own usually • that means a long soak in the bath My Health I started experiencing problems with my balance and had strange sensations in my left leg and arms at Christmas 2006, by summer of 2007 I had a diagnosis of possible MS. This is called being in limboland as it’s a maybe it is, maybe it isn’t but we cant tell you yet you need to relapse before we know for sure! It’s a hard place to be… • How best to support me …At home • Don’t get upset if I say I will do something and change my mind at the last minute it will be as I am tired and a • bit wobbly not that I don’t want to see you . I feel guilty letting people down so don’t nag! When I am feeling rough • I often spend the day in bed watching rubbish on the TV , I have learnt that’s ok • If I fall just help me get up, laugh with me and don’t fuss ! I find it embarrassing when I fall so don’t want • people drawing attention to it • If I look tired don’t tell me I already know ! But if my speech is slurred or I use the wrong words do tell me as I • don’t always hear it and its important I know but be aware I may not always appreciate it at the time ! • Don’t try to stop me doing things I know my limitations but sometimes choose to ignore them . It is my choice ! • Looking after Jake is important, it keeps me going , if you are worried about me come and help me but be prepared • To get wet as I often drop the water buckets when I am tired! • Sometimes I do all the things that are bad for me , like smoking too much or not eating well . Don’t pick me up on it • I know these things are bad for me but its about kicking back and needing to feel in control • I will talk about my condition and how I am feeling… but not all the time , I am not trying to avoid it or shut you out , • I am just frustrated about having to wait for the next relapse to get some answers so I choose to “park” it sometimes

2. How best to support me ….at Work • I can get very tired very quickly , I don’t always see this coming . Sometimes I just need to go home or not come • in and stay in bed . I hate being off sick, support me to work at home if I can as I will catch up later after I have • had a rest or let me take annual leave. • Over heating is a major problem as it sets off all my symptoms I need to keep cool so I need a fan or to sit • by a window. • My vision is affected, some days I cant see very well, particularly when its hot or I am tired. For computer work • a large screen and good lighting helps but sometimes I just need to do something else till my vision settles • Print budget sheets or project plans on A3! I cant read them even on a good day • If we are travelling together offer to drive. I wont ask but my spatial awareness isn’t good when I am tired and I • worry about parking . If I am on my own I use the train when I can • Don’t book meetings for me back to back it makes me too tired and then I get brain fog and I am no use to you anyway ! • Having a parking space near to where I am working is important . When I am tired walking up hills is like you • climbing Mount Everest .. Then doing a days work . I don’t need this all the time but having the choice is good • If you want to know about my health .. Ask ! As my employer I believe you have the right to ask . If I don’t want to • give you the detail I wont! • If I haven't done something you are waiting for remind me , this isn't just about the MS I have always been • disorganised! • Carrying things when I am wobbly can be a problem but if I balance things out I am usually ok, if I am not I wont do it ! • please don’t tell me to use a trolley because I won’t! • I often work at home late in the evening or early morning , if you get an email from me at an odd time don’t comment • on it! I work when I feel comfortable and like to catch up and do things when they are on my mind . This is my choice.