Two Things: My Scan, and My Schooldays

Hello again.  Well, the biggest news I have to share, is that I had my brain scan last week, at Wythenshawe Hospital.

I last had an MRI scan, just before my ill-fated stay in the David Lewis Centre (see last post for details) and that was quite a while ago, so I was a bit nervous about it.  But it was fine.  I know some people find the MRI scanner claustrophobic, but I found it okay.

The scanner was located in a portable building, outside the main hospital.  It was compact, but organised very well, with the Scanner itself, just beyond the place where all the work-stuff happens.  I had remembered that there had been a mirror, in the last scanner I entered, but I was informed that  there was no mirror in the one they put me in this time.  At first, I wasn’t keen on having to lie there with nothing to look at, but when I slid into the thing, it was okay.  There were lights inside, so it wasn’t dark, and there was air blowing into it, so no one could think there was no oxygen to breath, in the confined space.

The worst part for me, was when I had finished the scan and I had to sit up.  The room began to spin, and since one of my problems is light-headdedness and balance problems, I felt quite unwell for a while.  But I knew the feeling would pass, and the gentleman with me was very kind.  He got my husband so that I wouldn’t have to descend the steps from the cabin, on my own.  I was very grateful for the help I received.

So now, I just have to wait for the results, and see if they have found a reason for my new symptoms.

In my last post, I told of how I had been on sedation, in the form of tranquilizers, all of my life, even when I was a child.

At this time of year, when the schools go back, I sometimes remember my schooldays.  Do not think, for a moment, they are happy memories, they are absolutely not.

Many bad things happened at school, ranging from me being forced to write with my right hand, when I had been left-handed, to being forced to run  in the sports days, when I could not run, and having the whole school laughing at me when I came last.  The problem was, if I tried to run, I looked like King Kong, staggering home after a drunken night out and I was very slow also, so of course the whole school laughed at me.  Then, because I had been singled out as “different from other kids”, inevitably I was bullied.

I used to suffer from “absences”, which were put down to Epilepsy, even though the EEG tests never showed I had it (see previous post for more details) and because there was no proof of Epilepsy, my mum did not know what to say to the teachers, in order for them to help me.  I think many teachers thought I was lazy, in fact one of them actually said that to my face, and I was so upset.

Maybe the absences were more to do with the fact that I was zonked out on tranquilizers, but I was given the nickname, “Dozy”, and people would call me that, and maybe even worse, even when the teachers were present.  The teachers, of course, did NOT put a stop to it.

I am talking about this now, because bullying is still going on.  Children are still suffering.  Some even kill themselves.  I never got that desperate, because my faith in God and Jesus, helped me to cope.  In those days, we prayed in the morning, in assembly, and that used to help me to get through the day.  My Mum used to say.  “She who laughs last, laughs the longest”, and I think that this is true.

But when I hear of bullying still going on, I wonder why the teachers are not stopping it.  At times they must see it happening, as they did with me, and just like they did in my case, they must simply ignore it, or put it down to “teasing”. “Nothing to be concerned about”.  But it IS something to be concerned about, when you are the child it is happening to!

So I ask any teachers who might read this, to be on the look out for any withdrawn child who seems nervous all the time, or if you see or hear any name-calling, or several children, ganging up on one child in the playground, for God’s sake put a stop to it.  Don’t just think of it as normal childhood behavior, because, trust me, it isn’t.

Another message to teachers.  If there is a child in the school who cannot do the things other children can, don’t force them to do what they are unable to do, so that they show themselves up, in front of the whole school.  I think my teachers imagined that it would do me good, to get off my backside and compete, but what child would pretend to be unable to do the things his/her classmates could do, if, by pretending, the child would be subjecting his/herself to the ridicule of the whole school?  No child would do that.  I certainly didn’t

I did win a race, when I was five, but later, got a very high fever, which Mum said, might have been Rheumatic Fever, but the doctor wasn’t sure if it was.  After that, I could not run.  If I could have still run races like I did at the start of my school days, I would have enjoyed myself at every sports day, instead of dreading it, because I knew the humiliation that was coming to me.

I share my story, to help others who have gone through, or are going through, similar problems.  I hope it helps the victims, and makes others think about the way they treat people, especially in a school, or workplace.  I don’t think of myself as a victim, now.  I grew up, and I have a good life..  I don’t dwell on the past, but it is something that I can draw upon, in order to let others know they are not alone.  This is the main reason I started this blog, because I can share my experiences in life, so that I can help people who are going through similar difficulties.

I hope you have enjoyed my blog post.  I will post again soon.

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Medical Mishap

It’s Bank Holiday Monday and I’m updating my blog.  So what has been going on recently?

Well on the health front, I’ve had a few symptoms which have worried me, so my doctor sent me to see a neurologist.  I have not been seen by a neurologist for several years, not, in fact, since 2006.  I will tell you the reason for this.

The fact is, that in 2005, I was told, by my neurologist at the time, that I must be admitted to a place called, The Davis Lewis Centre, at Alderley Edge, in Cheshire.  This was because, since the 1980s, I had been taking tablets for epilepsy.  A common symptom of Tuberous Sclerosis Complex, is epilepsy, and not long after my son was born, I had some strange episodes, which were diagnosed as epilepsy, and I was given medication.

Over the years, however, I had several EEGs (electrodes on my head to monitor my brain activity)I was even hospitalised so that I could be  monitored over several days at a time, and there was no sign of epilepsy.  So it was decided that I should go into the specialized centre in Cheshire, to, once and for all, be diagnosed with epilepsy, or be cleared of the diagnosis.

I was against this idea from the start.  Here’s why.  First of all, I would have no visitors, as my family don’t have a car and the place is impossible to get to without transport of your own.  I would be completely alone in there.

Second, I was convinced I did not have epilepsy.  The EEGs had all been negative and I believed that my strange symptoms were the effects of acute anxiety, which I have always had.  I was on tranquilizers when I was just a child, I must have had every single kind there was.  In those days, acute anxiety was known, by the masses as, “Bad Nerves”, I always knew I had bad nerves.  I believe that when my son was born, it affected my nerves, as births can tend to do, especially if a woman has a history of mental instability, going back to childhood.  To me, this was the explanation…  I knew, that if I went into the centre, where they would take me off my medication completely, I would be in a terrible state.  The tablets might not have been controlling epilepsy, but they were controlling my anxiety.  I could not be taken off them all, overnight.  It could be dangerous to do so  But my neurologist would not listen to me.  I had to go into the David Lewis Centre, or I could not continue having treatment from him.

Reluctantly, I went in.  It was as I had feared.  It wasn’t a proper hospital and I did not feel safe.  The anxiety erupted when my tablets were removed and I began to have difficulty falling asleep at night.  It was like I was experiencing the abrupt removal of an addictive substance, which actually, was the truth.  I’d been on sedation since I was a child.  I couldn’t cope without it at night.  I was also in a terrible state during the day.  I did not even know the way to my room in the end.  I did not find the staff sympathetic to my plight, but that could have been because of the effects of my uncontrolled anxiety, not because of any fault with them.

Before my two weeks was up, I discharged myself.  The person who had taken me to the centre, came and took me home.  But I was unable to sleep, and afraid to go back on my medication in case I couldn’t get any more when the tablets had run out.  I was not thinking straight.  I realize now that I would have been weaned off the drugs slowly, by my GP, but I didn’t think of that at the time.  I couldn’t think of anything at all, except that I could not sleep.

When I next saw my neurologist, he was angry that I had discharged myself, but said that he believed I did not have epilepsy.  So why did he send me in the first place?  This particular doctor had, also, never taken my face blindness (Prosopagnosia) seriously either.  I had told him that I could only recognize him by the distinctive tie he always wore, but he said nothing about it.  It was not him, that told me there was a condition called Prosopagnosia, and that it could come from a problem in the brain like Tuberous Sclerosis.  No…  I learned about it from a TV show, a few years later.  He could have told me about it long before that.

So once again, I discharged myself, this time, from his incompetent lack of care.  I was placed on Anti-depressants, which helped me to sleep, and I’m still on them.  I will never be able to sleep, without help, as I had been on sedation too long, to be able to manage without it.  This is what the neurologist, and The David Lewis Centre, had failed to understand.  I was basically, a drug addict, through no fault of my own, but because of the old fashioned way that tranquilizers were dealt out like sweets, in the 60s and 70s, when I was growing up.  Then when, it was thought thatI had epilepsy, I went from tranquilizers, to epilepsy drugs, once again, a kind of tranquilizer.  Then, overnight, they were taken from me.  Who wouldn’t have had a terrible experience when that happened?  How could my neurologist have expected me to be okay?

So I haven’t seen a neurologist since, but the one I’m seeing now, seems like a decent guy, and he understands Prosopagnosia too.  I’m having another brain scan next week, to see how things are.

On the storytelling and performing front.  I’ve been performing at the club I go to, also at some open mic nights in Chorlton.  I’m trying to get myself known, so that I have more chances of doing more performing, whether or not I am paid for it.  I really love it, and I hope I will be able to continue with it.

So that is my latest blog post.  I hope you like it.  I will post again soon

My Storytelling Dream

If you’ve been following my blog, you will know that I love to tell stories.  I began a year ago, when I joined a brilliant storytelling club called, ‘The Success Stories Club’.  There is a page for it, right here, on WordPress The Success Stories Club

Last weekend, I performed at a fundraiser, for ‘Maggie’s Place’, which is a wonderful venue in Manchester, situated near the famous Christie Hospital, that is dedicated to helping, and supporting, people with Cancer, and their families and friends.  The picture I’ve posted, taken at Maggie’s, doesn’t show me, very well, but I am the third lady on the left.  The other people are members of our storytelling club.  The lady who is first on the left, is the club’s founder, Sharon Richards.

I really enjoyed performing at the fundraiser, and it reinforced a dream I have been having, about becoming a professional storyteller.

Once again, if you have been reading my blog, you will know that I have medical conditions which restrict me in many ways.  I cannot recognize faces and the reason I know who Sharon is, in the picture, is because she wears glasses, and I know that she posed for the picture.  I have all kinds of ways of recognizing people, but they are not foolproof, and it is always a strain for me, when I am interracting with other people.

In my last blog post, I told you of other medical problems I have, because of my Tuberous Sclerosis and Fibromyalgia.  Including confusion, memory-lapses, short term memory problems and Chronic Fatigue, so a conventional job is impossible for me.  I could not man a shop’s till all day (or even half a day) take money, give change, and talk to the customer.  I have tried, and it’s impossible.  I also, couldn’t type on a computer all day.  It would be too exhausting

A few years ago, I thought of setting up a jewellery business.  I make jewellery as a hobby and thought that I could sell it online.  Needless to say, it did not work out.  Some websites are free, but they are not good ones.  To have a website which people can find out about, you need to advertise it, and have a good domain name.  To set up a suitable site was all too expensive, for someone who doesn’t have much money in the first place, and no one visited my pathetic free site.

I tried hiring stalls, at various events, but did not make the money back that I had paid out.  So although I tried to become self-employed, so that I could come off the benefits, I could not succeed.  Hosting jewellery workshops is not an option, because I experimented, by holding a free one once, to see if I could manage to do it.  About 15 women showed up and I tried to show the clients what to do, answer them when they shouted to me for help.  Then go and help them.  The brain-fog descended within half an hour.  Workshops are a no no for me, I’m afraid.

But I am good at storytelling!  I can also sing.  I was trained to sing by an opera singer, when I was a teenager.  When I was young, I performed in armature operatic societies, and when I atended church, I always itched to perform.  It is something that seems to be in my blood.  People have always said that I am good at it, and I know I come to life on a stage.  My sister called me an attention seeker because I love to perform, but she didn’t realize that when I am on a stage, I am living.  Otherwise, I am just existing.

I think that, one reason I can tell stories, or sing, to an audience, is that the interaction is not the same, as talking to them directly.  I look into the audience, I make eye contact, but while I am talking to them, I do not have to answer questions, or perform a complex physical task, while I am talking.  I am just standing there, telling my tale.

So, I am now dreaming of becoming a professional storyteller.  Once I can get a story into my long-term memory, it stays put.  The difficulty, is getting it there.  But since I write my own stories (I never look up something online, or perform one that someone else has told) I have an advantage.  It is my tale.  I can practice it in the peace and quiet of my own home, until I know it by heart.

A few weeks ago, I told a story round a campfire.   I wasn’t paid as it was a club event.  But it showed me that I can perform to different audiences.  While I was telling my story, there were motorbikes outside the venue, and I carried on telling, even though I almost lost my place.  I was really proud of myself and it gave me such confidence.  At Maggie’s Place, I told the same story twice, in two rooms.  One lady complimented me, and others said they liked my story about a pregnant woman, her unsympathetic hubby, and a hypnotist.

Soon, our club will begin making videos.  When I have videos of myself, I will post them on here, and you can hear me tell stories.  Including the one mentioned above.  Hopefully, the YouTube videos will get some exposure and hits.  It’s one way I can get myself promoted and (hopefully) begin getting bookings.  It would be wonderful if, someday, I can call myself a professional storyteller, and no longer be classed as a sick woman on benefits.  That is my dream.

I will post again soon.

Love to all my followers, from Marilyn

 

 

 

 

 

 

 

 

 

 

Invisible Disabilities

When I began this blog, I mentioned that I am disabled.  But it’s not the kind of disability you can see.  It is the kind that people can’t tell you have, so it causes all sorts of problems.

The biggest problem for me, is that I can’t work, much as I would like to, but when you are relying on the benefit system, for your financial security, it is a tentative situation, to say the least.

My husband also became disabled, after working hard for 40 years, and destroying his body with heavy lifting.  Recently, because we don’t have much money coming in, he contacted The Works and Pensions, because we had been advised, by Welfare Rights, that I could be included on his claim and that we might get a bit more money than the £109 per week we were getting.  But when we contacted the DWP, I bet none of you would guess what they asked us to do!  They insisted that we send bank statements, dating back to 2014, with an itemized listing of what we had spent our cash withdrawals on.  This is because, since 2014, our savings had dipped, well below £16,000, and they wanted to know why that was?

It is obvious to anyone who isn’t a moron (so what does that say about the DWP) that our savings had decreased, because, the small amount of savings we had when Alan came off work, were accrued while Alan was working.  Since he’s been ill, we have never been able to add any money to the two ISAs, but we have had to replace broken items in the house, also, we have gradually replaced our single-glazed windows with double-glazing, and we have had to spend money on anything else that crops up in a normal household, like repairs to the house etc.

We feel that The Works And Pensions have behaved diabolically, for even asking us to account for money that they never gave us in the first place, and we did not spend everything at once.  We still have some savings left, because have been careful with our spending over the years, knowing that there is no way to re-replenish our money and that the savings have to last us all of our lives.

If things had stayed the way they used to be, before David Cameron and Nick Clegg made things so hard for disabled people, I would have been on my old age pension now, as I am 63 years old.  Because of their meddling, which seems even worse under Theresa May, I can’t get it until I am 66 years old.  Alan will actually get his pension before I do.

“So why not just go to work”.  That’s what people might say to me.  My answer is, ‘Chronic Fatigue Syndrome’.  Now this doesn’t sound like much when you say it, but it is one of the most debilitating things you can have, and the problem is, no one can see it.

Chronic Fatigue Syndrome is not a condition in it’s own right.  It is a symptom of many other conditions.  The ones I know of are:  Fibromyalgia (which is, itself, a misunderstood condition) M.E. (another misunderstood condition)  Lupus and Tuberous Sclerosis Complex.  I am sure there are other illnesses, which have this condition as a problematic symptom.

Anyone with Chronic Fatigue will recognise the metaphoric analogy, of the daily cup of liquid, which runs out during the day as we drink from it, and can never be refilled until the next day.  First of all, we wake up exhausted, despite the amount of sleep we have had the night before.  During the day, as we attempt to do our normal things, we get even more exhausted.  We have to sit down regularly because dizziness and feeling faint, overtakes us.  We feel like we have just built a motorway, even after just a short walk.

We have very bad memory and concentration problems, because our brains are working, as though through thick sludge.  Speaking for myself, I even forget how things work, like the oven or the microwave.  Even typing out this blog, I have had to plan it in my day, because when I have finished, I will be spent and will have to rest.

The other thing I have to mention to you is, we can not get used to a busier schedule, as people without Chronic Fatigue can do.  It is not a case of, getting used to going out to work, so that you get better at it.  Believe me, I have tried.  I even undertook volunteer work to test how I would be.  I really gave it my all, but I started to get bad tempered with the customers at the charity shop where I worked.  There was one particular time, when I had tilled up a lady’s items, she suddenly went away and grabbed something else.  She took me off my train of thought.  I had to re-adjust and till up another item.  This doesn’t sound hard to most people, but anyone with concentration problems will understand how I felt.  I am completely unable to multi-task, or deal with unexpected situations.  I just become so confused.  That day, I just panicked and had to finally admit that I could not do a normal job.

I love to go out and perform and tell stories.  It is something that I do, occasionally, and it gives my life meaning.  It means that I can achieve something despite my limitations.  However, on the days when I tell a story, or sing a song, I have to do nothing else for the whole of that day, otherwise I would just become confused and would be unable to think straight when I am performing.  I have to save my daily cup of liquid, for that moment.  I have to practice during the times I feel able to do so, and it can take me a month to learn something off-by-heart.  so you can plainly see, I could not go to work every day.  I would not even last the week.  Believe me, I only wish that I could.  As well as Chronic Fatigue, I have problems with my balance now. It’s not good, but at least it is something that people can see.

This blog today, is dedicated to all of those with invisible disabilities, whom others dismiss as hypochondriacs, or simply, do not believe.  I have Tuberous Sclerosis Complex, which I have had all of my life, and when I was about 50, I was also diagnosed with Fibromyalgia.  If you have an invisible disability, I know precisely how you feel.  I know you are not “putting it on”.  I wish to tell you, you are not alone.

 

 

 

Watch Your Step, At Sale Water Park

Hello again!

I want you to know that I am usually a pleasant person.  I don’t always complain about things.  I know a woman who complains at the slightest little thing.  For example, she ordered tea in a cafe, and complained that it didn’t come in a china cup!  Me…  I don’t care what kind of cup the tea is in, as long as the cup is clean, and has no cracks.

But I have, very recently, had cause to complain, and my complaint is about the tourist attraction, Sale Water Park.

It is a beautiful place.  There is a lake, a Visitors Centre with a cafe, and a nice restaurant halfway down the side of the lake, called The Boathouse.

Anyway, the Manchester Metrolink Trams, now run to the Water Park, so yesterday, because the writing group I attend (Sale Scribblers) was cancelled, I suggested to my husband, that we go on the tram to the park, for a day out in the sunshine.

Well, the first bad thing that happened was that the toilet at the Visitors Centre, was blocked up.  The woman in the cafe was apologetic, but, even though I have a walking stick, she refused to let me use the staff toilet.

“We’re not allowed to let customers through the kitchen, because of the hot pans.”

but who was to know? I certainly wouldn’t have said anything to anyone, and her boss wasn’t there to object! Besides, there should not be just one toilet in a busy tourist place!  She could have just let me use the loo, instead of telling me to walk down to the restaurant, and use the one in the water sports centre, attached to the restaurant.  But that was just what she told me to do!

So I had to walk to the next loo.  It’s actually not that far.  I followed the path to the lake and into the wooded area.  It’s the only footpath there is, and then… I came upon the stepping-stones!

Just as I said, there is no other way to go.  In order to proceed towards the restaurant area, you are forced to go across the stepping-stones.  Now I know that many people do not have a problem, but I do, because my balance is bad and that’s the main reason I always use a walking stick.  I managed the first two steps, with some difficulty, but the third was a step too far.  The space between the stones was too much.  I lost my nerve and was truly afraid.  My husband tried to help me, and a passer by did too, but I couldn’t cross the water.  I managed to get back the way I had come.  Then, the only way to get to the toilet, was to re-trace my steps to the Visitors Centre, and then walk along the road.

The road is dangerous!  It has no footpath, and the cars are coming along all the time, both ways.  So that was another nerve wracking moment in time.  But I got to the toilets eventually, although my day was ruined.

The Water Park is not ‘disabled friendly’.  Because it is a country place, it’s not flat, but there are no ramps anywhere, only steps, that is bad enough.  But the stepping-stones are lethal.  They are often wet, and anyone who is bad on their legs could not cross them, neither could anyone with a pram or pushchair, and if you were in a wheelchair…  Forget it!

This is not good enough, in this day and age.  I am no carpenter, yet even I can see that you only need a thick plank of wood, placed across the existing stones and secured at either end, then you would have a bridge, which would be much safer than those stones!

Where there are steps in the park, there also needs to be ramps, to allow access for wheelchairs and people pushing babies in prams or buggies.

And before anyone says, you can drive along the road, to the restaurant and toilets, let me remind people that not everyone is fortunate enough, to posses a car.  Alan and I don’t have one.  We have to walk or use public transport, so when we used the road to get to the restaurant, we had no choice, but to walk along it, and hope that the cars would not hit us.

Once again.  This is not good enough.  The Water Park could be a great place to visit, if it was accessible to everyone, but it is not.  The problem is, that people just do not speak out, when there is a problem facing people with disability, or people with young children who need to be pushed in prams or pushchairs.  If more people did, I am sure something would be done.  It is a shame that the park is not a better place, for those of us who are physically disabled.

So I have complained, and am trying to get the word out there.  I know this blog is a bit more downbeat today, but I hope you all understand why.

I wish you all a lovely day

I will post again soon

Best wishes from Mari