I have been watching a new James Martin series Operation Meet the Street. Each day James goes with a celebrity to the street where they grew up, to see what it is like now and to meet people who are lonely and isolated for whatever reason. Today the main people featured were isolated by the illnesses ME and Fibromyalgia, as I have both it really hit home with me. James was obviously moved by their struggles and introduced them to people who could help. Today’s episode (no 4) is available on iplayer for 29 days.
The aim of the show is to get the community talking and supporting each other with emphasis on socialising. I find socialising very difficult, I also have hearing problems so get very anxious and worry about being able to hear, in a noisy environment I cannot hear and join in conversation and the fatigue makes following things and joining in very difficult. I do try to go to some things, but usually sit on the sidelines and appear to be ignorant.
I am in the house alone all day, except for my PA and hairdresser who come in to do essential tasks for me, this is the only real contact I have and is out of necessity rather than desire.
I have a 7 year old daughter who I have to ‘care’ for and that uses most of my energy, getting her up and ready for school, getting her to school and back and just being with her. She doesn’t actually need much from me, but is still exhausting. Any social events I do go to are usually child, family centred, so can be very noisy and hectic. I need someone to take me to events, usually my husband as I can’t drive far and either need my wheelchair or to be able to park close to the event I am attending. On Tuesday there was a carol concert in the playground which I couldn’t go to as the cold would have been too painful for me, my husband had to take time off work to go, but I felt bad for missing it and guilty that my husband had to take time off to go when I was sitting at home. Tonight my daughters school is taking part in a carol concert in the local church, as my husband is out with work I have had to call on a friend to take us parking nearby is difficult so I need dropping outside whilst she parks further away. After the concert I will be exhausted and will have to get my daughter to bed and then go to bed myself and won’t see my husband at all.
Being a mum means that most of the things I go to are with or for my daughter and do very little for myself and what I can do with my daughter is also very limited. I was upset last night as Emily went to her Willows Christmas party, she didn’t really enjoy it as there was no one she knew and her key worker wasn’t there. I felt bad as I have to let her go and be picked up by someone neither of us know and be in a group of unknown people, I wouldn’t want to do it. Willows is an organisation for Children who have a sick parent and organises events for them to meet as they are in similar situations, but the kids don’t really get that I don’t think. For the children who have more seriously ill parent it maybe the only social events they get, but I try to ensure my illness does not limit Emily too much.
One of my main worries as a Mum is that Emily doesn’t get enough exercise, I take her to school and have to park in car park so she doesn’t walk far and we don’t go out walking or do any form of exercise as a family. When I was well I walked everywhere and I am sure I would with Emily too. Emily goes to a gymnastics class once a week, but that is all, even though she is always busy with something. She runs and around and jumps and shouts in the house which is difficult for me to cope with, but she needs an outlet and I have to try not to tell her off, but its not always easy, there are other times when I wish I could join in her madness or her song and dance routines. She has a trampoline and bike etc outside, but its the wrong time of year now and even in the warmer weather I find it difficult being outside unless it is very warm and she wants me to watch her all the time.
Being socially isolated has an affect on Emily’s social skills and she finds it hard having people in the house and using her things, she often gets very upset when she has a friend to play. Emily is an only one due to fertility problems so she feels the isolation too and its difficult for us both when she wants someone to play with, but we have to play something that I can manage. I feel I should make more effort to have her friends around, but can’t deal with the tantrums and preparing food, even if it is only fish fingers and chips!
I do very little for myself. I try to go to a Quilting group once a month, but in reality probably only go every other month and when I am there I am not able to join in the chat as the sewing requires all my concentration and energy. Recently my husband had to start taking time off to take me and help with some of the trickier parts of the class. In the new year the class with be closer to home, but will still be a struggle but I make myself go, but then it means I need Rob to finish work early to collect Emily from school if he has not already had the day off, so it makes doing something for me feel selfish to them.
Recently I attended a 5 ways to Wellbeing group, this was held once a week nearby, but again I only made it to about half of them. It was a nice friendly group and covered issues such as isolation, but I found it hard work to attend and was not able to join in as much as I would have liked. We are trying to keep in touch as a group on facebook, but its hard, especially at this time of year when everyone is so busy.
This time of year is particularly isolating as ‘normal’ people are socialising more and going out shopping, attending seasonal events. Being stuck in the house makes you feel as though you are missing out, but also joining in would be too difficult. I feel I am missing out on the build up to Christmas, whilst being exhausted by preparations such as online shopping, present wrapping and card writing. Not being able to work also compounds the isolation and the feeling of missing out or being part of a group. Yesterday Emily had her school dinner at school and tonight Rob is out for his work Christmas do, so I feel more on my own than normal and don’t get any special meals. We could go out for a nice meal, but it would be very tiring and also very busy and noisy so its easier to miss out, but it still hurts. I also have many food intolerances so eating out is a bit of a nightmare and again it just becomes easier not to. Even having a special meal in is difficult as I am dependant on Rob to cook, so its usually something he can do quickly when he comes home or something like jacket potatoes than I can put into the oven, so along with my food intolerances our menu is rather limited. Then if I say I am missing out others feel bad for doing things and I don’t want them to feel that either, I don’t begrudge anyone doing the things I can’t do, just envy them and miss it.
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