Archive | December 2016

Not if I see you first – Part two. Midday train to Portsmouth

If you have not read part one this won’t make much sense!

To me injustice hurts more than anything else. Not getting the chance to explain and rectify a misunderstanding. Others thinking things of you which are just not true, and no chance of redress. This to me has always been the hardest thing to accept. That overwhelming feeling of unfinished business that haunts you. The ‘what if’s’ and the scenario played out in your mind a thousand times.

I was at that station at the correct time on the correct day but have never had the opportunity to prove it.

After the disastrous first meeting with my natural Mum at Gatwick Airport and the disappointment that she wouldn’t be staying with me, I was thrilled when her friend phoned to say Mum wanted to come and stay.

I had only passed my driving test recently and I couldn’t contemplate the long drive to pick her up.  Also with two small children and a husband at work – who no way would ever stop for a day to help me – the only other option was for her friend to put her on a train. There wasn’t a direct route to my nearest station so we agreed the best thing would be for her to stay on the train from start to finish, getting off at the end of the line.  What an earth could go wrong?

I had frantically prepared my home.  The kids were put into one bedroom to share so I could get a room ready for Mum.  The shopping was done.  The meals planned.  The excitement at level 10.

On the day I left my youngest child worth my Mother-in-law and took my three year old daughter with me to the station.  It was about a thirty minute drive from my home and I left very early and gave myself plenty of time.

In the early 1980’s you could buy a platform ticket for meeting and seeing off people.  I bought my ticket and stood on the platform holding on tightly to my daughter’s hand.  As it approached midday I could hardly contain my excitement.  This was a momentous occasion for me.  This was something I had been waiting for a very long time – the opportunity to get to know my Mum.  The train arrived and people started to get off the train.  It wasn’t too busy and I would be able to see her clearly without a problem.  Everyone left the train – she wasn’t there!

A panic shot through me.  My mind was racing.  This couldn’t be happening.  Then it struck me – there were two stations in Portsmouth.  Fratton Park (Portsmouth) and Portsmouth Hard (as it was called back then).  Oh my god, could she of got off at the other station? I spoke to the guard and he informed me that another train was due in soon and maybe she would be on that one.  I waited.  She wasn’t on the next train either.

In a blind panic I started explaining to one of the station staff that my Mum had been very ill and I was now seriously worried about her.  I begged him to contact Fratton Park station and ask if they could see her waiting there.  He almost laughed in my face.  He must have thought it wasn’t a big deal and found it all amusing.  I went on to explain that she had been in an accident and had a brain injury and had been in a coma and maybe was at another station in a confused state. He did ask the other station to look out for her but they told him there was no sign of anybody hanging around.

Early 1980’s so no mobile phones back then just telephone boxes.  I phoned my ex-husband, which of course was a complete waste of time.  By now I was in floods of tears and asked him to drive to the other station and have a look for me.  He actually worked in Portsmouth but still would not help me.  He suggested that she probably got a taxi and went to the house.

I drove back to my home with every minute of that thirty minute drive seeming like a week.  I was just totally numb.  When I finally reached my house a neighbour immediately ran out of her house.  She told me that a woman had been knocking at my door and seemed very distressed and then got back in the taxi and left.

This couldn’t be happening.  Where was she now?  Where would she go? I couldn’t search, where would I start?  She had gone and could be anywhere by now.  I phoned her friend in Bristol to explain what had happened but what could she do?  We were both helpless. This was one of the worst days of my life and I didn’t think it could get much worse – but it did.

A couple of hours later I received a phone call.  A woman was screaming down the phone at me.  ‘How could you be so cruel, why didn’t you go to the station’. She went on and on and I couldn’t get a word in.  By now I lost it completely and was crying hysterically.  I pleaded with this woman to listen and believe me.  I explained I was there.  I explained there were two stations and she must have got off at Fratton Park which was in Portsmouth also.  No amount of explaining stopped her screaming at me.  It turned out this woman was Mum’s Sister, my Aunt.  Mum had gone all the way to Croydon to her Sister’s house in that taxi.

I can’t even explain how much this all hurt.  The pain was unbearable.  The confusion and the racing mind.  I felt so responsible but I didn’t do anything wrong.  I was there.  I was at that damned station.  I waited.  I desperately wanted to take my Mum back to my home to stay.  I desperately needed this opportunity to get to know her.  To spend time with her.  To ask a million and one questions to fill the gaps and the massive longing feeling I’d carried around with me my whole life.

I plunged into a terrible depression.  I could barely function.  I made an appointment to see my Doctor who immediately prescribed anti-depressants.  I picked up the prescription and drove home.  The next day I tipped the pills down the toilet and snapped out of it – somehow – I don’t know how, but I had two small children to look after.  They didn’t deserve to have a Mum in a state of depression.  They didn’t deserve to have to suffer just because my selfish Mother had abandoned me as a baby.  That was the past.  My children were the future.

A few years later I did see her again.  She was now divorced and had left Dubai and was living in Canterbury.  A strange choice as she was not from that area and all her family were in Croydon.  We drove down to see her.  It was stilted and awkward.  It got to lunch time but she didn’t have any food to offer us and my children needed lunch.  It was completely lost on her that we had driven hundreds of miles to visit and might need to eat something. We went out to buy some food and took it back to her flat.  It was all so cold and unwelcoming.  This was more to do with her accident and the brain damage and coma than anything else, but it still made everything so difficult.

What can you say to someone so damaged?  You can’t ask the things you wanted to, that would probably be upsetting or contentious.  The whole thing was useless and left me feeling empty.  I was searching for something to make me feel better.  Something to make me feel complete.  To understand.  Maybe even someone to show an ounce of affection but that wasn’t coming either.

I felt dejected.  I felt like I’d been left all over again.  I felt cheated.  The 80’s were full of TV programs showing these wonderful reunions with adopted children and their natural parents.  It was everything you expected it to be.  Hugging and crying and a wondrous moment, not a meeting at an airport where you were barely looked at or acknowledged.

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Into the madness

Cushing’s syndrome is a cruel illness. You suffer for years as diagnosis on average takes five years. My diagnosis took ten. Everyone overlooked my steroid inhaler. No one worked it out but why would they – they still believed inhaled steroids goes to your lungs and not your bloodstream!

Everything under the sun was blamed for my endless symptoms over those ten years. At first its subtle, the terrible anxiety, the weight creeping up, the insomnia, your blood pressure getting higher, the list is endless – the feeling that something’s wrong but no one believing you.

A rare illness that makes you fat and gives you an array of symptoms gets lost in a world of morbidly obese people who have chosen to eat and drink their way to obesity. You become lost in the system. You appear just the same as them.

You’re fat, tired, anxious, sweating, not sleeping, getting weaker and sicker by the day but the second you walk into a doctor’s office he’s glanced up and assessed you in a split second. They immediately come to the conclusion that you are unhealthy and obviously stuff your face and don’t exercise.

You can plead all you like about how ill you feel but you will not be believed no matter what you do or say. Instead you struggle on feeling so ill you don’t know what to do or where to go for help. There is no help at that stage at all. You blame yourself and convince yourself that it’s your fault. It must be something I’m doing wrong.

You never think you’ll get ill. When you’re well and hear about terrible illnesses you try your hardest to put any fears to the back of your mind. You can’t think about something like that and it happens to other people not you.  It’s a strange existence living with a chronic illness. This is something I had never thought about at all, I didn’t know anyone with a chronic illness and had no idea how devastating they can be to your life.

I became ill very gradually at first. The symptoms very much appeared to be the dreaded start of the menopause and this was the first diagnosis I was given.  I challenged the Doctor over this diagnosis as I was only 40 years old at the time. He assured me that many woman have started the menopause at this age and at that time I was still stupidly believing everything a Doctor told me. A catastrophic mistake that carried on for many years. I had no idea that a correct diagnosis of menopause should have only been made after hormone blood tests. I didn’t get any blood tests and of course, I didn’t know I should have.  From the symptoms I now know I also had  hypothyroidism at that time but blood tests were not ordered for that either.

I know rare illness is difficult to diagnose, but ten years – honestly – what the hell!

 

Friends without benefits

The one similar thing people with chronic illness say, is how it lost them friends.  Now you would think that’s not possible. You would also think the friends you have will be there for you more than ever now you’re ill. Unfortunately that isn’t the case and sadly it is true that friends give up on you when you have a chronic illness.

One of my theories on this is the fact they lose patience because they don’t understand you will not recover. You may improve as time goes by. You may even get back to virtually how you were before you got ill. Sadly though with chronic illness sometimes nothing changes or you get nowhere near back to the person you were and the exhaustion you suffer stops you from socialising either full or part-time.

What compounds this is social media. Before social media close friends would see each other on a regular basis and even if you’ve moved away then you would write.  An email tells you so much of what your friends are doing and how they are. You know things that acquaintances on fb do not, which is why you are a close friend.  However, now we have social media this isn’t the case anymore. We don’t write a personal email, we don’t share everything let alone our innermost thoughts. You become no different to a mere acquaintance. Someone who virtually may mean nothing to them at all suddenly gets invited into their lives. They now know exactly what they’re doing, where they’ve been holidaying, and then can browse their photos also. The privilege of being a close personal friend is well and truly lost. You’re just part of the process.  You’re just listed among all of their fb friends.  Your special status is lost.  The many years of being so close now has to be shared with any old ‘friend’ that’s been added.

Even Christmas and birthdays are changed forever. Gone are the personal cards and messages within. We now have e-cards or just a Happy New Year message through fb. Social media may bring people together but the damage it does to close friendships is here to stay.

If I was still living close by to my friends, I would like to think they would visit and be there for me now that I’m at my lowest point ever in my life. What worries me though is other sufferers of chronic illness aren’t just talking about people miles away, they are mostly talking about friends that are close by. They say they are constantly questioned as to why on one day they can seem well and on others they are not.  You definitely feel you have to justify a chronic illness to people who don’t understand.

I think you get left behind for a number of reasons. When you get invited to social events but are too ill to attend and decline several times, eventually the invites stop. Whether or not you would have improved enough eventually to go is irrelevant.  What’s important is that you’re still asked and not just written off forever.

I live a very long way from my old friends, but I still thought the support I needed would be there in the form of e-mails.  Just something to perk me up, but no, after the first few months my illness obviously became too boring for them.  In one way I was relieved to not have to reply to ‘’are you better yet’’? That question eventually became too upsetting to answer. I had explained over and over that I will recover from most of the Cushing’s syndrome damage – hopefully – but that there is no recovery from adrenal insufficiency and I would be steroid dependent for the rest of my life.

It hurts terribly that my friends knew the adrenal insufficiency had tried to kill me a few times but they still had nothing to say.  Maybe people don’t know what to say, but these weren’t mere acquaintances, these were friends that had been part of my life from fifteen to 30 years.

The hurt and pain will stop me from letting them back into my life.  They were there for all the good times, but not the bad.  The weddings, christenings, parties.  I’ve searched my soul to ask myself if I would also back away from someone who needed me more than ever.  I’m sure I would not.  I hope I would not.  The worrying thing is though, I just don’t know.