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.

Surviving in a Non Dyspraxic World at a Girls Secondary Modern School 3

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 part 2 of what it was like at Cheadle Kingsway Secondary School for Girls, Teacher and pupils names have been changed but the name of the school hasn't. Some of the funnier bits have become material for my stand Up Comedy.

PE, Maths and Chemistry and putting my foot in it.

P.E. Hell

I found competitive sports and PE. a nightmare and I was always the last to be chosen for the rounders or netball team. I did not learn to ride a bicycle until I was nine or tie my shoelaces until I was twelve. I tried desperately not to show myself up in P.E. although I hated it and only did this because I had to. I even got a grade 2 in P.E. one year on my report for trying hard. This was yet another disappointment to my mum who was more concerned with my poor academic grades and not my sporting ability

An incident I find funny now but at the time I felt like dying of shame. In the changing room after the compulsory shower after PE, the whole of second year were curiously staring at my well developed body like I was some kind of freak. I tried to get dressed behind my towel to have some privacy but couldn’t co-ordinate holding my towel and getting dressed at the same time. To my embarrassment my towel slipped exposing my enormous boobs and my fat belly, causing everyone to roar with mocking laughter. I pretended that I didn’t give a dam and told them all if it was that entertaining I would become a stripper when I left school. From then on I pretended I was on my period every week and refused to have a shower. If you are a well developed dyspraxic teen and your school still makes you endure this humiliation, I would advise you to get a towel with Velcro sewn onto it.

me at 16

 Another incident which was disastrous for a self-conscious adolescent occurred, but I can laugh at it now. During PE we all of second year were made to stand in line in the hall for misbehaving. This was no big deal to me as it was a preferable diversion. I began to develop tummy ache which was getting increasingly painful, but did not dare ask Mrs Peters a PE teacher with wrestlers legs, who had taken a dislike to me if, I could go to the toilet. I decided that I would relieve the pain by letting out a bit of wind. To my dismay a noise like a balloon being let down reverberated around the hall, causing the other girls scream and run away. I tried to blame it on Hazel who had the misfortune to stand next to me but everyone knew it was me! I’m sure if Hazel had blamed me if she was the farter she would have got away with blaming me.

In fourth and fifth year I wagged P.E. by hiding behind the mobile units, preferring going to detention and copying from a dictionary knowing full well the teachers would not look at what I had written because they also had to stay behind. This was less of a punishment than doing PE as far as I was concerned. Avoiding exercise didn’t help with my weight problem. Needles to say my PE grades went right down to a grade 5 during this time. By the time I was 12 I went on diets lost weight and then regained weight. This led to an obsession with dieting and binging which lasted for 20 years. Loosing weight was one of the few ways I got social approval from my peers and as an adult felt in control of my life. I can't find any photos of me when I was t my largest so I must have avoided the camera.

Maths

When I was about 14 my organisational skills suddenly improved I think I had developed my own strategies to organise myself or perhaps it was a stage of maturity in my development. I began to get on with my work and my standard of work dramatically improved.

 In third year I had Mr Summerhill a good looking man with an addiction to cigarettes who wore a horrible grey green suit for work, which was often stained by a leaking biro.  He was a really good maths teacher who could relate to young people and wouldn’t stand any nonsense. Thanks to him I began to make good progress in maths and got fatly good marks for this. To my dismay in fourth year I was put in the A stream for maths with all the brainy students. I had forgotten how to do some of the calculations I had been taught and because we were in the top maths class, we were expected to get on with it without much help. I wanted to ask Mr Summerhill why he had put me in the top stream but I was too shy to approach him. I soon got moved down to a lower stream but not the bottom one.

The Mystery of the Flying Zinc

One day after buying a stink bomb from the joke shop opposite the78 Record Exchange in Stockport I decided to let it off in school. I calmly walked into the toilet and threw the stink bomb over the toilet cubicle wall then cool as a cumber I walked out. 30 seconds later a stream of royal blue clad girls came running out, spluttering and holding their noses. I commented that it was a very childish prank because of the pong I did not have to pretend to look disgusted.

Mrs Smith I have a confession to make, It was me who threw the zinc at you in chemistry, although who would suspect someone who couldn’t throw a ball properly to aim so accurately?  Mrs Smith was a very stressed out chemistry teacher who was easy to wind up and make her red in the face and explode with anger.

My Brother Robin and I,yes we both could ride a bike

In chemistry I developed a phobia about using the pipette with acid. There were not suckers in those days and we had to use our mouths to suck up liquids, (Maybe I was scared of burning a hole in my neck) so I 'wagged' chemistry by hiding in the toilets and read ‘Clockwork orange’. I now realise that my phobia was due to my poor co-ordination. I got into trouble because my teacher thought I was deliberately being awkward so I fulfilled my deviant role by dropping chemistry. I was very disorganised, although I deliberately used to forget my P.E. kit I did unintentionally forgot to do my homework, to bring in the correct subject file and cookery ingredients.  Mrs Swain a cookery teacher who was considered to be very strict because she was the head of fourth year was the only one who realised that I couldn’t help forgetting things and asked me to do some baking for her.

As Tactful as a Bull in a China Shop

Some teachers thought I was not trying hard enough I, and my English teacher Mrs Bryce a softly spoken woman who used to be a nurse gave up on me because she thought I was good at creative writing and was not reaching my full potential.  She was the only teacher who could see through Veronica when she buttered up the other teachers to become a library assistant then a prefect. Mrs Bryce was exasperated by my poor spelling and written presentation. She had assumed my lack of progress in these areas were part of my defiant attitude towards her. During a lesson she asked me a question about a poem, I could not answer her because I was not paying attention.

When she asked me why I couldn’t answer.

I said

“To be honest Mrs Bryce I wasn’t really listening”.

The whole class were impressively shocked by what they though was one of my impertinent put downs, when it was an untactful discourse; I had tried to explain that my mind had wondered because I had difficulty focusing on what she was saying. She told me on her last day of teaching at Kingsway that she had given up on me for wasting my potential.

I would be unintentionally being tactless to my friends. I unintentionally offended my friend Mary. I went to her house for tea and when I used the bathroom I could not find the light switch. I told her entire family that their bathroom gave me the creeps not meaning to be critical about their house. They all thought I was being toffee nosed because I lived in a big posh house and my dad drove a Jaguar car. This faux pas went around the whole school and was an excuse for other pupils to have a go at me. Not only had I offended Mary’s entire family but her best friend Hazel because this used to be her Grandma’s old house. Though it was quite acceptable for my peers to say deliberately disablist, fatist, racist and Anti- Semitic comments, without anyone defending me.

I left secondary school with Grade 1 in Biology and grade 2 in Home Economics, Geography, Art and English. And grade 3 in Maths. These types of grades were perfectly acceptable for my school but I realise now that I had significantly underachieved. My career advisor Mrs Whitely who did not even know me well recommended that because I was "non academic", I should go into catering which proved to be totally unsuitable. I didn't fancy doing silver service which is just as well so I did a bakery course at Tameside college instead  but that's a blog for another day. I would have been better doing O levels and having dyslexia support at my local sixth-form college, but there was no such service. I don't feel any bitterness and resentment after all these years, but I'm glad the Dyspraxia Foundation is working with the British Dyslexia Association to raise awareness in schools so today's young people don't have similar experiences to mine.

Surviving in a Non Dyspraxic World at a Girls Secondary Modern School 2

Part 2 -   Scrapping & being Bullied

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 part 2 of what it was like at Cheadle Kingsway Secondary School for Girls, Teacher and pupils names have been changed but the name of the school hasn't. Some of the funnier bits have become material for my stand Up Comedy.

Cheadle Kingsway School before its makeover

Scrap! Scrap! Scrap!

I made the naïve mistake of telling Veronica from my previous school that I couldn’t tie my shoe laces. A few days later June a friendly girl who was fond of boys and obsessed with the Osmonds, asked me to tie her laces for her because she hated the touch of canvas. I knew Veronica had told her about my difficulty and June was trying to show me up.  I fully expected to make a fool of myself but calmly tied her shoelaces. I had not realised I had mastered this and had been wearing slip on shoes for a couple of years; June must have thought that Veronica was making up one of her lies.

There was a class distinction in the styles of bulling.  Working class girls preferred physical violence and respected you if you won a fight; whereas middle class girls preferred psychological abuse. However there was not a class distinction in name calling. In the first three years of school I was a constant target for fighting.  A red haired Australian girl named Stella, picked on me thinking I was an easy target and wouldn’t fight back. She called me a fat woggy cretin and had been goading me all lunchtime! I lost my cool and flattened her so her sister Colleen came along to defend her and after one punch to her face she was crying because she had been to the dentist earlier in the day.

 When I moved  into a different class to Veronica  she soon drooped my like a hot potato and began deliberately throwing insults so it would be my idea to fallout with her. In front of what looked like the whole school, she called me a useless, mongy, specky-four–eyed spastic, who was fat and ugly and had no friends. She challenged me to meet up with my ‘friends’ at lunchtime so that the whole school could see that no-one liked me, and she would bring her many friends along to show how popular she was.

I was hoping this was one of her fantasies and did not take up her challenge and had forgotten about her outburst, she brought a whole crowd of girls who looked like blue bottles buzzing with anticipation at my humiliation, because they had took her side. The whole event backfired on her, when the roar of ‘SCRAP! SCRAP! SCRAP!’ resounded across the playground. I could tell she didn’t want to fight with me because I had list my temper with her previously and she was coward. But before we knew it we were pushed together. A red mist came over me because of all the years of humiliating me and the way she had treated me in the past. I really laid into her, digging my nails into her badly scratching her arms and face. She ran away in tears and everyone cheered at my victory. She later tried to turn my assault on her to her advantage by trying to imply that I was inhuman for making such a vicious attack.

Another girl Dora who couldn’t stand the sight of me, grabbed hold of my hair because I was accused of losing June’s skiing socks that had mysteriously disappeared from the wardrobe of the Her Farter(sic) hotel bedroom, during a school skiing trip that I had spent most of my time falling on my backside. I refused to give June the £1 she was asking to replace them to raise money to fund a going to an Osmond concert. I suspected she had taken the socks herself and was trying it on especially as the socks were old and darned and not even worth 25p. Dora he best friend a short stocky girl with very fine mousy blond pageboy haircut grabbed my hair which was wiry and curly so it sprang back when it is pulled, poor Dora on the other hand hair was not as resilient so when I retaliated by grabbing her hair a huge clump fell out  creating a toupee on the floor,  leaving a bald patch, so she ran off crying. Although I was only defending myself I felt really mean as I did not intend for Dora to lose her hair. I quite liked Dora and did not know why she hated me so much.  The incident gave fuel to Veronica to reinforce the rumour that I was a wild animal who didn’t know her own strength. Mrs Barlow a trendy teacher who had had her hair streaked questioned me as to why I got into so many scraps, I was defensive because I thought she was blaming me and did not know where to start explaining why I was picked on so much. Surprisingly I never got disciplined or suspended for fighting although Mrs Law would have loved it.

The school bully Carrie was always picking on me and making anti-Semitic remarks and she was friend of Veronica looking for revenge. She was a better fighter than me because she was quicker on her feet than me and very cunning. She had the tactics of a boxer giving out hard slaps and punches dodging my uncoordinated attempts to hit her back, and running away so I couldn’t hit her back. Everyone was terrified of her. I realised that she was a very troubled and unhappy girl with low self-esteem I hated to think what was going on in her head and what must have been happening at home to make her so evil and vicious. She was very rude and aggressive towards the teacher’s and made me look like an amateur at disrupting classes.  A few years ago she actually contacted me on Friends Reunited and apologised and said that she was an unwanted child as her Mum gave birth to her late in life. This was why she was allowed to get away with murder as her parents didn’t care and let her do what she liked. She was happily married and living in Japan and would make sure she showed that she loved her children.

Next Post is the Final Part of  what it was like for me a Kingsway