Dyspraxic Fatigue- OMG Im so Tired

The Purpose of this blog is to promote The Dyspraxia Foundation E book' "Dyspraxic Adults Surviving in a NonDyspraxic World" self help book for dyspraxic adults. All proceeds go to the Dyspraxia Foundation Adult support groups. Available on Amazon for £9.99

Two of my dyspraxic colleagues Rosie Edmondson and Natalie Williams have recently written blogs on dyspraxia and Fatigue, so I thought that I would share my personal experiences of dyspraxic fatigue.

My mother used to joke that when I was little that I could sleep on a washing line. Since I was a child I have needed more sleep than the average child and lacked physical stamina. I was exhausted when I got home from school and got into trouble for forgetting to do my homework.and my peers referred to me as 'a dozy sod' It isn’t lazy but it's necessary for a dyspraxic to recharge their batteries and have me time. It didn’t help that after a day of bullying in school, instead of getting time to chill, I had to go to Cheder (Jewish Supplementary School) every Tuesday and Thursday evening as well as on a Sunday morning. I got bullied again and ostracised at Cheder. My peers thought I was stupid because I found learning Hebrew hard. I decided I just wasn’t interested because I didn’t fit in..

in my mid 30s, after Manchester City Councils Redeployment system placing me in the worst possible type of care job for my type of dyspraxia. I worked in ‘the Day Centre from Hell’ I ended up having a sleep disorder. I nearly got sacked for falling asleep when service users watched TV and had to use avoidance tactics by diverting them into other activities to avoid getting into trouble. Staff bringing in service users commented on how tired I looked and how I should have an early night, when I was in bed by 9.00. I was the laughing stock of the centre and I got bullied for being lazy as well as 'pretending to be stupid when I was intelligent'. This was due to having a high verbal ability not in line with my practical skills. I genuinely couldn’t help dozing off at work. I had to do some very physically demanding care work that I just wasn’t cut out for.Such as hoisting, feeding and dressing very highkly physically dependent service users. So I was treated with utter contempt by some staff but not all staff. I think my brain just went into shutdown.

I ended up having to be off long term sick. My doctor told me I had a virus (something they say when you display symptoms and they don’t really know what’s wrong with you). I wasn’t any better when I went back to work so had more time off work so colleagues really did think I was taking the P*** I then got referred to a sleep specialist who told me to drink coffee but it didn’t help. I had my sleep monitored for narcolepsy and sleep apnoea. But my tests came out with normal sleep patterns. So I was put on anti-depressants that made me worse and was referred to a day psychiatric unit for support but they didn’t suggest anything I hadn’t tried myself. Eventually The extreme fatigue stopped.

Don't Fall asleep After your Christmas dinner or you'll end up on Face book 

Now I’m on the menopause I do wake up at 4.30 in the morning, then sometimes I go back to sleep until 6am and often I’m tired at work.I have to switch my phone off when I get home because I’m so exhausted that I can hardly put a sentence together. Things I find that help with fatigue are a balanced healthy diet, a cool spray by the bed for hot flushes, less caffeine, and chillout time in the evening. If I do wake up early I either start a new blog (today I'm wide a wake now so I'm proofreading this post) or I do my exercises. Herbal sleeping tablets only help if I can’t get to sleep first thing at night but I still wake up at the same time. I also try to avoid sleeping in the afternoon when I’m at home (but sometimes I just can’t resist) as this is more likely to make me wake up early. It doesn’t make much difference If I have my mobile phone by my bed or not but I do switch it to mute

When I come home from work my house looks so untidy that if a burglar broke in they would feel sorry for me and tidy up. People who don't understand judge me for the chaos and think I'm using my dyspraxia as an excuse. This makes me reluctant to let anyone in my house because I feel so ashamed but at the moment I don't have the energy for housework.Some Saturdays I don't feel like doing anything at al. Instead of chilling out on a Sunday, I have to support my Mum who has Dementia.
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I have never experience fatigue as bad as that since, but I still get tired easily  Sometimes I have days where I’m full of energy followed by a day when I just can’t concentrate and crash. There are days of what I call ‘walking around with my head up my backside’. If your dyspraxic I’m sure you can relate to this. I know I’m going to have a dyspraxic day. As soon as I wake up. I put things down & don’t remember what I’ve done with them and I'm just not with it. I have a good laugh when my fitness watch says I’m asleep when I’m walking to work, sitting at my desk when I’m wide awake or talking to my boss because its hopelessly inaccurate about my sleep patterns..I'm not the only dyspraxic at work there must be at least 4 of us I do forget to put reminders on my calender before they go out of my head but I'm coping quite well.

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 [JT1]

 [JT2]

How I set up the Dyspraxia Foundation Manchester Adult Support Group.

The Purpose of this blog is to promote The Dyspraxia Foundation E book' "Dyspraxic Adults Surviving in a NonDyspraxic World" self help book for dyspraxic adults. All proceeds go to the Dyspraxia Foundation Adult support groups. Available on Amazon for £9.99

This blog is about how I came to set up the Dyspraxia Foundation Adult Support group and the history behind it.

 In 1999 I was struggling with Manchester City Councils redeployment system that didn’t understand how to support a dyspraxic adult in the workplace or find suitable placements (A topic for another blog).

 At the ripe old age of 40 I was medically retired and pensioned off. I contacted Mary Colley (who very sadly died of breast cancer in 2010). I got emotional support and asked her if there was a support group in Manchester. There wasn’t one in Manchester so she suggested I set one up myself. To her surprise I told her I had experience of group work so I volunteered and I became the Dyspraxia Foundation Manchester Adult Support Group Co-ordinator.

 I first met up with Frances Shawcross the children’s co-ordinator and we went to Gill Dixon (who is now the DF’s Vice chairperson) Adult Support group in York. I also met Ken Hummer who was the Lancashire Group co-ordinator in St Anne’s. On sea. I am also dyslexic so I joined the Manchester dyslexia group meetings held in the basement of the Vine Pub.

In October of that year I organised our first meeting at a side room in the Briton’s Protection pub. I arranged to meet group member Geraldine Fletcher at my house so she could park her car and we would get the bus down to the pub. Unfortunately, Geraldine couldn’t find my house so I was late for the meeting.

 

Pub night 2004 with Founder Members Mark Brown, Ian Churchley, Geraldine Fletcher

 I arrived half an hour late very flustered to find Philp Mathews (my X boyfriend) and is friend Keith and to my surprise about 20 other people waiting for me. Some had come from the dyslexia group for moral support, some dyspraxic adults came on their own but the majority came with their parent’s.

I think Frances was reluctant or me to carry on with the group because she had low expectations of my abilities and thought that she was going to have to do all the work. the best way to win someone’s respect is not to fight with them  but to prove them wrong. She soon realised that I was more than capable of facilitating the group without her support. The group was very successful and I realised that I had found my true vocation in life and I started a new career in community development work.

I found that those adults who came with their parents did not speak for themselves and their parents spoke for them. This made it difficult if they wanted to talk about private issues. I got one of the parents I socialised with to facilitate parents group meetings and during socials where they still insisted attending with their adults which prevented them for engaging  with other group members. So parents sat at another  table together. to allow their adult to be themselves and interact with other group members. 

When we changed pubs and the meetings moved from Sunday to a Saturday afternoon and not a Sunday the parents decided to do their shopping and come back for their offspring. Eventually they didn’t come at all. I decided to make it a rule that non-dyspraxic parents were only allowed to come to the first meeting with their adult  and that it at the groups discretion if they decided to invite them back. 

The meetings were much more structured than they are now. There was a committee meeting followed by a group discussion such as ‘which pen is dyspraxic friendly’ with socials in-between. There were many much younger adults in those days so we had occasional socials for under 25s and gave them the opportunity to go clubbing in Manchester. I also was on the DF Adult support group Committee and later the Developmental Adult Neurodiversity Association (DANDA) committee. I helped out at their conferences and was often a speaker.

Christmas social 2008  at the Ann Lee Centre

 I improved my work practice by studying on the Diploma in Community and Youth Work at the University of Manchester. Although at the time I was happy to do all the work such as admin, minute writing, organising meetings and meeting people to show them venues: I realised this was not good practice as the roles should be delegated so that the group can run itself.

Although in most Dyspraxia Foundation Groups the co-ordinator chairs the meetings, I realised that it was good practice to empower others to give them the opportunity to chair meetings so Terri Rayner became our first chairman. She was very feisty and politically minded and when I became a student at the University of Bolton I studied with her during the Final year of the Degree in Community Studies. She had set up a disabled students support group and was very proactive in advocating for students who were not having their access needs met. Teri stood down and Miguel Hayworth became the chairman. Teri very sadly died in 2012 from Multiple Myeloma. Robert Hopkins is now our chairman and is also the Co-ordinator of the Preston Group.

Terri Rayner our first Chairperson

 In 2003 I won a Millennium Award to put on a conference on dyspraxia awareness for both adults and parents. This was held at the GMB union’s conference centre which was a great success and along with Manchester group volunteers, Mary Colley and Colin Wright came down from London to help out.

In 2004 a year before DANDA was founded The Manchester Dyspraxia Foundation Group became independent from the Dyspraxia Foundation and we became Dyspraxia Adult Action. Then Manchester Adult Neurodiversity Action and we were affiliated to DANDA.

 In 2006 I stopped running the group to study on the PGCE, unfortunately although I tried very hard we to delegate the group folded due to lack of proactivity. I relaunched the group In 2009 but I became ill with depression and anxiety due to being in the wrong job the same time as My Brother Robin dying of a sudden heart attack. For the first time the group became more proactive and ran it for themselves and gave me emotional support. When Mary Colley passed away, we decided in 2011 to go back with the DF as DANDA folded as a national organisation and just became a London group.

In 2011 we put on a ‘dyspraxia’s got talent’ show at the three minute theatre that was successful. I would also like to thank Emma Morris for campaigning for me to be voted for the Mary Colley award in 2013. In November of 2015 Emma and I published the E Book Dyspraxic Adult’s Surviving in a non-dyspraxic World which is selling slowly but steadily.

 Here is a link to my blog about the story behind the book.

Some of Dyspraxia Group 2016 Including our Treasurer Richard Hooker and past Secretary Heather Wainwright

I have learned the skill of delegation, the group runs itself. We also have volunteers who meet new people to help them find our venues as well as greeters in the meeting. Now that I am standing as a Dyspraxia Foundation Adult Advisor in July’s AGM in London, I will be only organising Manchester meetings every 3 months. It will be up to the group if they still want monthly ones. I will be frequently going down to London f to represent dyspraxic adults at DF trustee meetings. 

Now Robert Hopkins is our current Chairman and the group is still very proactive and can run itself and quite often they run the group whether I attend or not. Heather Wainwright and Ruth Foley help out too. We have occasional committee meeting and usually meet the first Saturday of the month at Nexus Art Café or The English lounge pub. It is easier to manage and for the group to be self-sufficient than structured meetings and much more popular. Free association is when people engage in social activities and give each other peer support. This means that group members talk more about their dyspraxic issues than in a formal environment. We encourage a positive attitude towards living with dyspraxia rather than being passive victims who moan every month about how awful it is to be dyspraxic. But we are supportive of those going through a difficult time. Hopefully we get the balance right and we definitely have a good laugh and a chat to put the world to right.

 From Left, Robert Hopkins, Heather Wainwright, Cas Whatson, Jane Ireland, Kevin Cotton

I would like to thank everyone who has been involved with running the dyspraxia group past and present and for supporting me when I was depressed.  This experience in group development gave me skills in community development to go back into paid work. It is very rewarding and I have made friends with a lot of lovely people. I have been told several times by group members, that attending group meetings has improved members wellbeing and self-esteem. If you are a dyspraxic adult looking for voluntary work and there is no Adult Support group in your area, why not have a go at setting your own group up starting with socials in Pubs or coffee bars and take it from there.