At the 5 ways session today we started to talk about being active and how that improves well being. I felt rather awkward and there is no point in saying I can’t be active, no one understands. If I am too active it makes me more ill and results in pain and fatigue that most people would feel after running a marathon. For me every day life is too active and I need at least 2 hours of rest each day and to be in bed by 9.30 to have any chance of feeling ok and that rarely happens. I have had a busy weekend visiting family and helping to sort stuff from my Grandma’s house, which was physically and emotionally difficult.
Today I dropped Emily at school. I have issues even with getting Emily too and from school as driving is difficult and then I can’t get parked close enough to school as I can’t walk far so have to arrange for someone to open the gate to the car park so I can park and just walk Emily to classroom and back to the car and that’s enough of a walk for me. Last year when her classroom was round the back of the school I could not walk round and had to take her in through the main entrance, which of course made her stand out as being different, the last thing I want to do. It’s so embarrassing having to ask for special treatment I just want to blend in and do the same as everyone else. I hate driving and used to walk everywhere, I would love to be able to walk. I do have a mobility scooter but can’t use it if it is wet or cold and at the moment I have a problem with the battery so haven’t been using it for fear of breaking down!
After school drop off I had a physio appointment, much needed as I have been in a lot of pain. On arrival all the disabled spaces were taken so I had to park further over and walk, not much to most people but it all adds up for me. I am not sure how the disabled spaces get used up so fast as it is at a local sports centre and the majority of people are there to use the swimming pool and gym, I should be so lucky! Next I have to stand in a queue at reception to get a key for the lift as I can’t walk up the stairs to the physio room, its embarrassing, but at least they have a lift.
As it is Monday I then had to get to 5 ways, there is no parking close to building so again a short walk that I could have done without. The session is hard work, concentrating and listening and trying to join in and I kept thinking I had had enough and needed to leave, but stuck it out. Then it was back home to eat and rest before school pick up.
Since then I have done some tidying up as no one else will do it, still Emily’s room to do, but can’t face that. As Emily has gone to gymnastics and Rob has taken her I have to have tea ready for when they come in. I can’t stand and prepare food so have to get things chopped up and it has to be something I can cook easily, but its still a huge effort.
I am really exhausted and running on empty, for me the day has been too active and I will pay the consequences. I am constantly paying the consequences as a basic everyday life is too much. I need to cut my activity that includes physical and mental activity to enable me to feel well, but its impossible. So when I get told I also need to exercise to feel better it does rather annoy me. Its not that I am lazy and don’t want to exercise, I like walking and swimming, but I can’t do them any more. Getting out of bed and getting downstairs can often feel like a days work.
Last night Emily wanted me to chase her around, I said I couldn’t, she said you can walk not run, but I even had to say no to that, its really upsetting and she can’t understand that because I do move about and do things that it is difficult. Twice last week I was in bed before Emily and have a feeling tonight maybe the same.
There are some who would think that if I did more I would be better, believe me that is not the case, I already push my limits and endanger my health. I have had times when I am so worn out I can’t stop shaking, or can’t walk another step and when I was pregnant I was paralysed for about 12 hours as my body had just had enough and I was in hospital for a week. I don’t learn from this myself though and run the risk of these things everyday trying to be as normal as possible.
We also discussed the positives and most people felt it was beneficial to look for positives. My ones for the Saturday were getting some things sorted out, sitting watching plane trails in the perfect blue sky and my Mum putting Emily to bed. On Sunday I managed getting home and going to bed!
We have to carry on the list of positives for the next few weeks and either make steps towards connecting with people or being more active. I will be trying the connecting with people. I feel like making the active one steps towards being less active, but not sure it would help much as I just feel like I am unable to do things.
Well time for a short break before microwaving the tea!!
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