Poem I’ve had saved for years now…

Can’t sleep, going through old notes and things I’ve saved and I come across a poem I wrote. I think I probably wrote this a year or so after being diagnosed, when my mum begun to lose her voice. Probably a little bit lame to share this, but I feel it gives some insight. P.s if any of mums old carers read this, it’s not you guys who stopped caring! I’m forever grateful for the excellent care you gave mum!

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Sat in her chair looking around and just staring, Since she stopped talking, people stopped caring.

Talking about her when she’s sitting right there, trapped inside her body she’s fully aware.

She attempts to talk, to let you know she’s still there, the disease won’t let her all she does is gasp for air.

Don’t worry mum I notice you I’ll be your voice. I won’t ever give up I’ll make sure you get a choice.

I will help you fight this every step of the way, I’ll ply you with alcohol we all know it makes your day.

There’s not much you can do now since you came off your feet, but there’s still your guilty pleasures of your favourite things to eat.

I’ll see you when I can even if it’s a short while, I’ll sit and paint your nails, help you keep your style.

It’s not fair how this disease has robbed you of so many years, it breaks my heart to see you but somehow I fight the tears.

As I spend time sat with you I know you haven’t got a clue, that you passed your condition onto me, I’ve got Huntington’s too.

I sit and watch and people disappear from your life as you get sicker, I can’t help but feel that’ll be me one day so with loved ones I begin to bicker.

The one good thing to come from this is the bond that we have made. We’re a team you and me, because of you I’m not afraid.

You’ve taught me that regardless of what drama is going on, always hold your head up high and mentally stay strong.

I love you little lady on me you can depend, I’ll fight this battle for you, until the very end.

 

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Relationships and dating

So tomorrow, it will mark four years since I was told I had Huntingtons Disease. So its semi inspired another blog post! This is about how being diagnosed affected my relationships, and the struggle that has existed ever since.

Before diagnosis, I never gave much thought to where my relationships with friends, family etc would end up in the future. I just plodded along taking each moment as it comes and accepting whatever life threw at my way. When I was diagnosed, things soon changed.

There lies the problem with being told you have something so devastating, I’m not a selfish person. I never thought about how my future is affected, it was how it affected everyone I loved that worried and still worries me. I pushed so many people away, because I either didn’t care about them enough to concern myself with their bullshit, or I don’t want to turn on them in the future when my mind perhaps isn’t what it once was.

However, on the plus side to this I have some amazing friends and family who basically told me to stop pushing them away and they forced their way back into my life and have remained ever since. I broke up with a very on/off girlfriend of mine as I realised if she was abusive before me getting sick, she wont get better as time goes on.

I swore to remain single, I swore I would never settle down with someone because I didn’t want to put them through all the hard times that were to come into the future. I had relationships, where I promised to settle down, promised the world but deep down I did everything to sabotage my relationships so I had excuses for them to end. It’s a tough subject to approach, at what point do you tell someone you have interest in that you have a terminal genetic condition? Its a bit too much to disclose on a first date, but then equally you don’t want to wait until they develop feelings because you feel like you trick them into something they might not want to be part of. That is the exact reason why I just didn’t bother with dating, casual flings and going back to familiar exs was just easier. As far as I was concerned I was going to get sick alone, with just friends and family, no wife/husband, no children, less damage.

Of course that all changed, I then met Faye. Now as it was, Faye had been sort of linked to my life since I was 15, so she already knew about the HD and never judged me for it. I had no intention of getting serious with her, she knew this, she also didn’t want a relationship either! I had the perfect set up, until I fell and I fell hard. In the past I have used the L word quite freely, to those who probably didnt deserve it, but I knew this time it really was different.

Then comes the dilemma. Knowing I have Huntingtons, I can’t just sit back and enjoy the relationship and see where I end up, because back comes the paranoia of hurting someone, back comes the feelings of wanting to push away anyone who comes close because in my mind it was doing them a favour. I couldn’t do it with her though, I didn’t want to. So then comes ‘the talk’, a descriptive long discussion of what the future holds for me and for whoever I end up settling down with. I don’t just mean a simple oh I have this, and this will happen. No no, I prepare this girl for the future, I tell her the worst of it, I even detail what I would need her to do for me when the time comes, what end of life care decisions I have already made, at what stage I want her to put me into a nursing home. I go into all this detail and think to myself ‘right, this is where I lose her’. I dont though. She sits, she listens, she tells me she will face whatever is to come, no matter how much it breaks her heart, because that’s what you do when you love someone. Fuck. Fuck, fuck fuck fuck. That is when I actually realised that I deserve love, and I wouldnt let this disease prevent me from embracing it for another moment.

When I was first diagnosed, I was so scared that I thought the best thing to do was to go it alone, I had all the support around me but secretly I planned to move away the minute I got to a certain age, now I realise that by planning which I believed was for the best, I was being selfish. I write this blog incase anyone reading has been diagnosed, and they’re in that position where they are pushing people away ‘for the best’. It’s not, what you think and feel is protecting people is actually going to hurt them more in the long run.

I was so convinced I didn’t want people to go through the heartache with my journey that I forgot the one thing about it all that really matters, the one thing that gets someone suffering through the hard times and that’s love. Just because you have a condition, whether it’s a terminal illness, a genetic condition or deformity or perhaps even a mental illness you fight everyday, it doesn’t mean you aren’t entitled to be loved and cared for. Love doesnt judge, love is unconditional, and love is the one thing that will end up facing your demons and battling them.

At least once a day, I sit back and worry about what I’m going to put those I love through in the future, but then I realise that is their choice. It’s not like people don’t know what the future holds, and they’re still here, by my side, ready to face it all. I realise it’s almost selfish of me to think like this, because if something happened to those I love I would be there no matter what, so naturally they’re going to do the same for me.

However, one thing I urge people to do, if they are worried about me or the people around me being affected by my future…. talk to me! I haven’t gone blindly into my life and future, those closest to me have strict instructions on what to do when I can no longer decide for myself, and the decisions I’ve made are mainly to put them through the least pain possible. I even have letters written, for those I love, not to be opened until a particularly bad day. There is nothing I haven’t planned, preparing for the fight.

Sometimes I wish I never found out, so I could just plod along with my life.Deep down I couldnt cope with not knowing though. One thing is for sure, from the minute I knew I had it, it has impacted on my life ever since.

 

 

Don’t be so negative, there might be a cure in your time!!!!!

This blog post is titled after a common phrase said by many people when I speak about my future. Very often people will speak of their future, how they don’t want to get old, how they hate the idea of being in a nursing home or needing nursing care, and I do sympathise and see their point working in nursing care, but for me, this disease will at some point get to me, it’s highly unlikely I will grow old and it’s 100% certain that I will end up needing nursing care and losing all independence, if something doesn’t get me before Huntington’s does. There been conversations about reaching retirement and if someone asks me I’ll reply I probably won’t get to that stage and immediately I’m told to stop being negative!!! What people need to realise is I am not negative, I do hope in the future that there will be a cure and if it comes before my turn then its a bonus, but acceptance is what truly keeps me going in this life.

I accept that I have this disease dwelling within me, I accept how it may implicate my future, I accept what will happen in years to come, this doesn’t make me a negative person. My mum lived in denial of the disease, in utter denial before it took hold and until the last few years of her life when she was affected. She neglected herself for years, when I look back at how she lived for a while it breaks my heart because she was alone through so much of it, and denial and lack of understanding is what got me there.

What people need to understand is I’m not negative, I’m just prepared. When the time comes I know what I want, I’ve made sure my loved ones know what I want and have written it down should there be a time when I lose my mental capacity to express my wishes. I want to make everyone aware of the steps to take when I am in denial of my behaviour, to make sure I don’t push everyone away and to get medicated correctly.

Which leads me back to my title, when people say this to me I understand why, they find it heartbreaking how morbid I sound when I express a detail that shows I’ve mentally prepared for the future, but what people don’t understand is how much holding onto a cure can affect my life. I do have hope, I do still have life goals I just know I have a timeframe to work with, I would sooner set myself this way than hold onto a hope for a cure and not get everything I wanted out of life when I begin to get ill. I am not negative, when the times comes I wont accept it and let it defeat me, I will fight it! However I will not hold onto hope for a cure like it is the be all and end all, if I go with how people tell me to be, live life a little slower because I think a cure will come in my lifetime, and then the time comes, I’ve not done everything I want to do and why, because I held out for something that didn’t happen. It upsets me because people say it to make me think positive, but all it really does is frustrate me, I’m very stubborn and very mindset, allow me to cope with it in the way I want to cope, not how you think is best. All I truly hope for, is that when the time does come, my awareness has helped make my journey a slightly easier one not just for me, but my loved ones and peers around me. A little less ignorance, no hiding in the shadows, just a little compassion and understanding.

There wasn’t much point to this blog, other than to rant about the entire hope situation, I am aware that many people with Huntington’s are hoping for a cure in their lifetime, and equally there’s nothing wrong with this. Im just extremely realistic, which will lead me to the next blog post when I can be bothered, and thats relationships.

My mum, my little lady. From hatred to pure devotion and love.

So I mentioned in the blog before about my hatred for my mum. Well as I got older I decided that regardless of how my upbringing was, I was going to be there for her. I had friends that visited with me, I found it hard to visit alone at first but I got there in the end. As she became more ill, she could do less for herself, she was put on the correct medication and it was only then that I begun to see a different side of my mum.

A side that always told her carers about her children, about me!! Until then, I always thought she hated me, until I heard tales of her speaking about me, I softened. How could I hold this disease against her!? Thats what Huntington’s does though, it changes someone so much that people turn against you, well not everyone, I see a lot of wonderful people devoted to their loved ones on support groups with warms my heart, gives me hope that I won’t end up like my mum if I  have the right people around me. My mums friends, where were they when she became ill!? When the going got tough, they were no longer around.

All mum had was her family, not many, understandably after all my aunties passing away all their immediate family probably found it too hard, too many painful memories of what they had lost. I understood that, so mum had her children.

So I visited as often as I could with college and then a full-time job to contend with. Somewhere along this decline of health for little lady came my results. Thats when I saw things in a different light. I know I will cause a little controversy when I write this, but this is how I see things and how I felt, so I will continue to express this.

I realised the minute I got my results, that one day, it will be my turn. The first time I visited little lady after my results I sat there, watching her struggle to swallow her thickened fluid, eating her pureed diet, that I realised one day that will be me. I pictured myself in the chair she was in, someone feeding me, and that tore me apart.

The positive from this all was because I spent so much time with mum I saw a side of her that inspired me to fight this. Mum refused a peg feed, and as hard as it was for our family to deal with the fact she was wasting away I totally understood. I don’t think I would want my life prolonged when the time comes, if I am too ill to eat which if anyone knows me it is clear I love doing this, then I’ve lost part of my quality of life. I saw that my mum despite battling all her problems, she was so stubborn she would continue to try to fight, taking great pleasure in her Malibu and coke Id sneak in for her and her secret sandwiches when she was meant to be liquidised food only. Together we made a great team, I would bring in her favourite things and in return she would eat for me, give me a big smile, and we developed and amazing bond. When I used to make her laugh, my heart would fill because I knew that if one day this was me, and I was being treated like this by someone I love, my life would be okay. I took great pleasure in knowing I made mums life better, and by doing so my own life got better, I had inspiration and I had a mum, even if she could barely speak. It got to a stage where I learnt her gestures and frowns, and when she was saying yes or no, I had my own way of communicating. This made me realise that if I had the right people in my life, my own battle with Huntington’s would be okay. I would have a reason to live and until the time came I would make sure I made the most out of life, and educated those around me in preparation for when the time comes. I learnt from my mum’s mistakes that ignorance and lack of education is what makes life harder for those who suffer.

The negative was seeing despite the support I gave mum, but seeing the lack of support other people had. I know this will offend some people, and truth be told if you’re paranoid this is about you than your conscience knows you didn’t do enough, that’s not my problem, its yours and you have to deal with that!

I watched the few visits from people, and I couldn’t help but get angry not only for mum but also because one day that will be me, and if they wasn’t bothering with her then I felt one day they also wont bother for me. People found it too hard, but not once did people stop and ask me how I felt seeing mum, they had my anger thrown at them because I developed this attitude that if people didn’t bother with mum, don’t bother with me. It was hard because I felt with every hospital visit she had, I went down with her. I rode the highs with her, but I felt every low more than anyone could imagine, because that is the reality. One day, that skeletal lady fighting every step of her limited life, that will be me.

We became a little team did me and little lady, I became her voice and I was so proud to be her daughter, to have a mum who wasn’t going down without a fight! As her health worsened I realised I needed her closer, more available, I asked her if she wanted to move back to her hometown, where we all lived, and for the first time in ages words came out of her mouth.

When we got her back to Hastings, she was wide awake, eating and drinking, buzzing to be back home. It was in the home I worked in, but on a different unit so I did not directly deal with looking after her. I will never forget when she was settled in my at the time flatmate came over as I was on shift and told me to go see her because she was asking for me. My mum hadn’t spoken in well over a year, so I thought she was trying to be funny, until she said ‘no seriously, go see her, shes asking where’s my charlotte’. I still didn’t believe her, until I walked into her room and the nurse said ‘who’s that steph?’. Then came out of her mouth ‘thats my charlotte’. I cried, like a baby, and that’s the horrible yet beautiful thing about the illness, that it takes away a person, but when you stick by the person, you see little glimpses of their character burst out, its only then that you really appreciate life! I felt so proud, to have come from hating my mum to being so close she called me not only by my name, but said I was hers.

Unfortunately, after a few weeks, one phone call saying mum took a bad turn, which we had heard before, only this time she really had. Me and my brother sat down next to her, one either side, and she just looked half asleep, even then we didn’t realise what was about to come. I wiped her mouth because she was dribbling, which was nothing out of the ordinary, she made a funny little noise and my brothers face changed. I don’t know what he said other than she’s not breathing… the nurse had just walked into the room, checked her pulse and it was confirmed. In that moment, my entire world literally crumbled, I saw the harsh reality of the disease. My little happy bubble being there for mum burst, I coped with my diagnosis bouncing off of her, we bounced off each other, and now she had gone. It was like I suddenly came into the real world, I saw my mum, just passed, a fragile skeletal lady at only 5 stone, 57 years old, taken because her heart couldn’t beat anymore, heart failure is common amongst people with Huntington’s, I guess because they lose the ability to eat, or barely eat, it slowly kills their body from being too weak.

My brother was crying, the nurse kept saying I’m so sorry, and I just couldn’t keep it together, not only had I lost my world, I knew that this exact moment, somewhere down the line, would happen. I sat holding her hand, crying, then I felt suffocated, I should have been there for my brother but I had to get out of the room, a sudden thought came into my head and I needed to escape out of that room as far away as I could if only for a while. What was the thought? Its going to happen to me, and I’m going to be that fragile tiny person taken by this cruel disease.  Any positivity I once had went right out of the window, just filled with one negative thought within. Huntington’s Disease was in me, and one day, it will take me.

The photos I have on here are of my darling mum, one just before the disease took hold, and one just a week before she passed. If my words aren’t enough to describe the damage it does a comparison might hit home for people.

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I can’t end this blog without saying one thing, this lady was the reason I write this, the reason I share what I’ve been through and am going to go through. Not enough awareness was around when she became ill, when she passed I said my goodbyes, apologised for not telling her I had Huntington’s and I made a promise to her that I wasn’t going to make the same mistakes as her, I’m determined to try to reach people through this. If only a few, it’s a few more than before. I’m not doing this for myself, for people to feel sorry for me. I’m speaking up for this lady, even after she’s passed, I feel like theres a story to be told and people need to hear it, to be educated a little. Love you forever little lady ❤

My mum, my little lady…

This post will be the hardest post I will write on this entire blog. I’m probably going to end up pouring my heart out, but please bear in mind I do not want sympathy from it. This blog is about my own journey with Huntington’s, but this journey would never have begun if it wasn’t for my lovely mum god rest her soul. So here goes her story with Huntington’s from my upbringing. I think I will do this in more than one part, as there’s a lot to tell.

I’ll probably end up calling my mum little lady, that was my nickname for her, for she was just that in the end

So I guess to start with her illness, I can’t tell you when it started, because I can never remember her ‘normal’ so to speak. My mum had battled a problem with her hearing when I was just young, so her balance was always off infact she was told at one point she wouldn’t be able to walk, did she listen? Yeah right, stubborn was within little lady and I believe thats why I got to spend a few more years with her than we all expected.

She had always had balance problems, and if I’m perfectly honest my mum never really seemed to like me, I will never know if that was her disease, or her, but I think deep down she loved me, she just had an extremely odd way of showing it.

As I got to a slightly older age the hatred for my mum set in, the arguments she always caused, the name calling, the physical abuse. I didn’t understand why she was the way she was, so to me she was just a monster. Her and my dad always fought and argued, many believed my dad physically abused her because she always had bruises. Instantly there is the first assumption people made! Part of Huntingtons is the chorea, the jerky sudden movement, with that came falls by the dozen, which explained the bruising. Admittedly my dad pushed my mum a few times, but this was self defence from the crazy things she used to do. I could detail, but I don’t feel the world needs to know the ins and outs of her behaviour swings, she wasn’t an evil person and I dont want to paint an evil picture, it just wasn’t pleasant.

Now I think about it her behaviour was not normal in the slightest, myself and my dad had to take it in turns to sleep because god forbid if both of us were to sleep, it was sure to end in arguments or disaster. He used to keep back some of his wages and not tell my mum, hid it in his shoe, when she wasn’t around he would take me on many days out, if it wasn’t for that shoe fund of his, we never would’ve got through life I don’t think. Our own little escape now and then.

As years progressed this behaviour became more obsessive, more hateful, yet more needy. The movements got worse, her mental health constantly declining, and she became extremely obsessed with my brother. Calling him at every opportunity the poor man, I feel for him, but equally to be the only child in the household I was in, its a surprise I have ended up being relatively normal.

So after a messy divorce eventually which involved a kidnapping from school, they broke up. Mum left the house, and I couldn’t have been happier for a few months. I was 13/14, I had no understanding despite growing up with it because there wasn’t the support at the time to try and explain this disease, only some crappy little leaflets telling me of the symptoms, which if i’m perfectly honest does not prepare families for their loved ones decline whatsoever. My dad had taken her problems for so many years and cared for her that when she left he had time to concentrate on himself, I don’t think he knew what to do and ended up having a nervous breakdown. I moved in with my brother and had contact with my mum every Friday.

My mum lived alone, in a flat with spiral stairs, the falls continued, her health, hygiene and living arrangements all went downhill. I dont know if anyone was there, admittedly I still hated her, I frequently asked her to admit to the violence growing up but she never did. I swore until she did, I would never try and build a bond. Looking back she probably didn’t admit it because she didn’t even realise she did it. Another scary part of Huntingtons, the memory loss, the mood swings, and the total loss of control of your life. Mum never got the support she needed and was way too stubborn to accept help. My brother managed to get her home carers, but she would lock them out of the house or just go out. She didnt need anyone as far as she was concerned, and off she would go into town. Everyone assumed my mum was a drunk in town, she befriended drunks who took advantage of her for drink money, and I think my mum was so lonely she accepted the company off anyone. Some scumbags even accompanied her to the toilets in town and mugged her. It makes me feel sick now to think about what she went through, and the guilt of not being there for her around that time will always remain but I made up for it when I became a little older and realised just how ill she was.

Eventually little lady accepted help, went into a home which was awful, they had no understanding of her condition, and she fell down a set of stairs and cracked her head open. I found out around a year ago that not only did this happen, but mum actually got back up from her fall and went back to bed bleeding. It was only in the morning when the day staff came on that she was found, she could have bled to death. What a disgusting home. Quite often my mum would just disappear from the home, on my 17th birthday we had a call saying the police had been contacted because she was missing, at around 1am the police found her. In a 24 hour food place, she wanted a coffee. I have to laugh looking back because that was my mum all over, she knew what she wanted and she didn’t stop until she got her way! So after the head incident she was moved to a specialist home, finally! It was then that I ended up seeing my mum in an entire different light.

Results- part2!

So that was that. I have huntingtons disease. Her telling me this was like a full force kick in the stomach, all of a sudden the tiny office got tinier. My entire world seemed to turn into a blur and all I could focus on was the crappy brown envelope, I took a deep breath, simply said ouch, okay. The pain inside was ridiculous, what the hell do I do, then I looked around at the ladies who accompanied me. One of my girls said it must be wrong, asked if I could be retested, the other two just looked broken, and me, I was just numb. 

That when something inside me clicked, when something in me just toughened up. I saw how devastated my friends were and I knew then that I needed to be strong, for myself and for them. If I fell apart it would only make them worse, and to be honest I needed to kid myself I was okay, I’ve never been one to fall apart and I wasn’t about to start now. So I simply said I needed to go for a smoke, planned to meet my counsellor in a few weeks to discuss all this and off we went. 

I got outside, and id already messaged a few people, all I could manage was a text simply saying ‘I’ve got it’ ease them in gently why don’t i!!!! Haha… Poor sods.

Then the phone calls began, I asked my brother and sister to let family know, my friends covered the rest for me. We begun to walk to the station and suddenly I felt like I was in slow motion. The world rushing around me. It really didn’t feel real. I prepared myself for the worst, but deep down hadn’t expected the worst. 

Then I thought of my dear old mum, sitting in her nursing home with no clue I was even being tested. I decided there and then she didn’t need to know, in her lifetime she wouldn’t see me suffer, so she didn’t need the sorry and the guilt. It was then I truly developed a total understanding of how strong my mum was. My inspiration, and for as long as she was around, I was forever inspired to be positive. What would I do when I lost her? I hadn’t thought of that yet, I wasn’t going to think of it either. 

The next day I coped a little worst, I drunk my body weight in alcohol, which is a lot of weight, I got picked up from town where I ended up sitting alone at 3am and had my flat mate pick me up and bring me home. It was then I finally got my tears out, cried my eyes out because I didn’t want to end up with hardly anyone there for me like my mum. Most people found it too hard being around my mum as she got sick, can’t blame them, but I hated to think of me being in the same situation. I cried and cried, was sick a lot, then cried some more. What a mess, my at the time best friend held back my hair and cried with me. I thought that was the most heartbreaking moment huntingtons would bring to my life. Oh how I was wrong. 

Results day- Happy Huntingtons Day

So 20th April 2012 was the day my life would quite literally change forever. For weeks until my results I analysed every movement I made, I clearly remember watching my finger twitch sitting on the toilet just two days before my results (deal with my too much information people!) and swearing to myself that was hd. Thinking about it now that was probably just your average random spasm. That’s the thing though, when you don’t know the outcome yet you find yourself analysing everything. 

I took three of my best friends with me to London, this is what I did for every process including the pre counselling and bloods, involved a friend I planned to keep in my life, break them into what could be a harrowing journey for our friendship down the line. 

We went for lunch, acted a bit crazy, went to a pub for a prenerves drink, what started off as a sunny day turned to rain, it all felt doomed from the start. This pub was dingy, and the girls play a song on the jukebox for me as they know I like it. The song was phil Collins- against all odds, bless them, putting a song on for me, but inside I remember finding it hilarious playing such a depressing song just before my results, but it appealed to my twisted humour and now everytime I hear the song I crack up.

So then we walk to the hospital. Sit down and wait, I remember tapping a lot, wondering why we were late in. Panicking, analysing, wondering if I made the right decision, looking at the door thinking I could just run away and hide from the truth.

Then she called me in, I took the girls with me, I think she asked me how I was feeling, but all I remember is staring at the envelope in her hands knowing my future was going to be mapped out. We had agreed at my blood test that she was not going to know the results and open them infront of me. The moment she opened the envelope I saw her take this horrendous breath of air in, her face changed, sympathy was written all over it. I knew before she said the words, I didn’t wanna hear the words, I held tightly onto my friends hands, looked at them all wide eyed and waiting. Then out came the dreaded words. 

‘Your cag repeat count is 42, which as you know is positive. I’m so sorry’……….

Fuck……………