What people don’t realize?

There have been many challenges I have faced in my life but nothing has prepared my for my journey being diagnosed with an under active thyroid at the tender age of sixteen a condition that runs in my family and is normally associated with over sixty fives, but here is me of GCSE age diagnosed with a condition that pretty much has an impact on most of your body. I have spent most of my life being tired taking days of university due to having headaches so bad I couldn’t get out of bed. The pressures of trying to maintain that expected university academic standard and not really getting any support apart from my partner who was the very person who made sure I finished the degree. As at one point I was ready to hand the towel especially after the miscarriage and having staff whose job is to teach you your passion mock you in front of everyone about your abilities. You don’t know me and my journey I’m glad I haven’t bowed down and gave up let these people who don’t understand invisible illnesses try and beat me. I am a stronger than a lot of people realize I have had so many tests done on me before the doctors reached that diagnosis my thyroid was that low I don’t even remember being in hospital and why I was there. One minute I’m sitting in front of my high school headteacher  acting out of character I knew my throat hurt so much I couldn’t speak it was like someone had ripped it out and stepped on it. I didn’t grow to my full height I get aches and pains every time my medication is adjusted. I don’t know myself most of the time whether this is a normal version or just a person running on auto pilot just plodding along with daily life somehow despite having a body and mind that could sleep forever as you are that tired. I would get a headache from just reading, writing a paragraph even painting i would get pains in my arms and hands after so long. It was like I was a soul trapped and fighting to escape my own body battling everyday to achieve what I wanted to achieve, So back to when I was in hospital after being at high school I remember being an ambulance and waking to an aching back from when I had a  lump puncture  saying to my mum ‘Why does my back hurt’ The fact I was in Great Odmond Street Hospital in London must of meant I was pretty ill to be here  my local would of been Chasefarm Hospital. Either way its a freaky experience but there was one male nurse that kept be going and making me laugh despite how bored I was of being there. I can’t remember his name but I just want to say thank you and I still can’t believe you came in singing Mr Bombastic which I asked you too as you just wanted to see me smile bless ya. From this point on wards I was in a room full of doctors giving a low down and risk factors as sixteen year old you are uninterested and just want to get back to normality chilling with your mates. I wish I had listened then maybe I would be more equipped and less scared of the future. So I had to take medication everyday for the rest of my life and have regular blood tests of T4 T3 AND THS things that i just didn’t understand though it was always funny when it was too high because you be able to get loads done but you deep down know it isn’t good for your heart. So this was my life tired, aching, headaches, pain my wisdom teeth are stuck so I get jaw ache and have to where a gum shield. I soon accepted this for what it was knowing that my life would be harder than others due to the tiredness and I would have to be more determined to get by. I made it too University yay that’s when the true stress started fall outs with family over various matters that affected my degree and what I wanted to achieve. When I had that miscarriage though I was like why why can’t I just have a baby like everyone else and again you just here sorry to hear that and it’s just one of those things. One of them things that now people think is connected to a low thyroid. So this effected me emotionally and mentally I eventually did conceive and have a child, by beautiful boy Cameron who makes me smile every day. I had a healthy normal pregnancy no problems there developed anemia but thought nothing of it. It made me more tired but that was nothing new. I realized I was feeling the cold more than I used to. Whilst I was at university I developed mild dyslexia I knew this was related to memory, spelling and grammar they were always the things that I struggled with. If someone was to ask me anything about contemporary art now I just be like mm let me think.

Well here’s me in hospital to be induced because little man was well to comfy and liked it in there. I had to have a c-section because I failed to progress my cervix just weren’t having it. Again probably related to not growing to my full height because of the thyroid. So here’s my little son well big son of a nice healthy weight born to Alicia Keys song New York. Love that song reminds me of hope and never to give up. So I’m on the maternity ward not really myself we just put it down to the usual tiredness and having a c-section. I needed to rest but I got up and saw to my son. I don’t know its because I look younger than my age or the fact they just thought lets see if shes capable I was bottle feeding him but the other mum’s were having there babies passed to them.

So I come home from the hospital, I get into bed next thing I know I’m back in hospital but this time for seizures. I had screamed and started having tonic clonic seizures which were later diagnosed as onset focal seizure disorder, as the temporal lobe was the focal point of a partial seizure the scream and then the secondary seizure the tonic clonic. I still had an under active thyroid and had anemia. Fun, fun not this is not what I had in mind for the beginnings of motherhood. In hospital after the seizures which I was having many with gaps in between as I don’t remember a lot. I remember hallucinations of the building floating and crumbing and the people didn’t look like they should this was weird. What was going on it took a while to get to normality. Luckily my partner looked after our son along with the help of my folks whilst he went to work. I got to certain point and again  had enough I wanted to go home. I couldn’t even remember having a son it was only by the pictures my partner took that jogged my memory. So it took a while for the initial bond to happen.

I also discovered at this point that this condition epilepsy runs on my dad’s side a brother of his had it and sadly pasted away. Fantastic looks like theirs a genetic link there. From this point I had to change many things of my life some of which I couldn’t do anyways. Like driving as I was too short but if I drove and had a seizure I could hurt myself and others around me so this never interested me. Smoking which I never did as this can be a trigger and alcohol the one thing that seems to define social life in some way. I had to give this up as well as it was also a trigger. Not a problem I had more important things being a partner and a mother moving on with my life. My medical life was controlled it was at the right levels thyroid went up and down but what do you expect.

We had our own place a little flat big enough to raise our little family for a while until all the toys mounted up. Our son was developing fine sat up at normal age took to holding his bottle no problems he was a hungry baby loved his food. He had a dummy to reduce cot death and he slept no problem. One night though his breathing changed it was struggling, we ran 999 and he was taken to hospital he had bronchitis and later developed asthma. We nearly lost him from this moment on wards I knew I was going to fight my son’s corner no matter what and be a even more protective mum. It affected us both emotionally for  while the shock that something like that could happen but we thanked god and the luckily stars and passed away family members and counted  our blessings that he was still here.

When our son had his developmental check up at two his development wasn’t as it should he wasn’t saying enough words as was deemed the normal amount so he had speech therapy his hearing was fine. He also already had the diagnosis of asthma which he was in and out of hospital for he just kept getting chest infections and it lately being kicked off due to stress or shock.  So we plodded along counting our blessings dealing with things as they came, shared all information with the relevant people so everyone was kept in loop even stuff that I knew the nursery probably already knew I took it there. My partner changed jobs due to various reasons.

Everything was going fine I was as healthy as I could be I was still tired but was able to do every day things and get on with them. We plodded along my son started school he was frustrated so would lash out as he didn’t know how to say what he meant and this meant his timetable was reduced as he was deemed unable to cope with school life. There were times when I wanted to scream and shout when they waited for me to arrive when my son’s asthma was that bad that he needed hospital treatment. I even expressed my frustrations to my GP he only gets ill there. We also had to move due to a repair not being fixed on a house we were renting and we stuck between good neighbors. Stress and anxiety just do not mix so we moved to where we live now and things went back to normal. My son’s asthma has calmed down maybe because were near farmland here so the air maybe more cleaner and again we were healthy. My son was still delayed but was catching up everyday and was talking more. Getting cheekier than ever by the day.

But our peaceful life of having my partner finding a job he enjoyed, my son being more happy and being more confident and beginning to calm down about my anxieties of my conditions  and was more reassured that everything was going to be okay and we could have a normal existence that everybody experiences. On the 30th of June, the seizures came back it was just me and my son at home the partner had gone to work as usual as you do like any other day. My partner thought I wasn’t myself in the morning but we knew that my conditions could make me have mood swings and be quite emotional so we thought nothing of it. My partner rang me to see how I was I still wasn’t myself. I must of taken myself upstairs to have lay down which I normally do if I get a headache or jaw ache when its unbearable. I was in the process of putting the laundry away my son must of wanted me to do something and asked me to get up, because the next thing I remember is hallucinations of being on spaceship a light being the earth but at the same time I was seeing my family in this earth. Familiar but not this was scary again what was happening, a doctor switched the light on and off I had so many seizures again that I had to be sedated to make them stop. On the 30th of June my son of five saw me have a seizure if my partner didn’t come home by the time of the second one who knows what could of happened. Next thing I remember before the hallucinations when I properly thought and was coming back to normality that I had a MRI scan I was so glad and happy to see my family again I discovered that my thyroid and my seizure medication was too low. We still don’t know the cause but it could of been numerous things medication hormones can be a trigger for seizures again this I did not know and I had been under a lot of stress with dealing with my son’s school and getting them to understand and give them the help he needs.

They slowly was understanding but can not believe how much times have changed. Once I had enough strength over my bladder, walking, talking, etc normality basically, I was still weak and didn’t have enough strength. I knew I should of been resting but on the 20th of July I had a meeting  so I had to express my worries and concerns in regards to the needs of my son and my recent occurrence of having seizures and now being on keppra a new medicine on top of what I was already on, a quite strong one. I expressed my concerns about the type of seizure I have and my son’s asthma and whether getting transport could be a way of solving this problem. They said we get that is scary but we have a MS  parent who we can’t get transport for, no offence but im like do you not know anything about my conditions im in an unconscious state once I’m in tonic clonic I  can’t talk, see nothing they just didn’t get it. I said all I remember from last time was laundry, MRI, hallucinations and hospital. Am I the only one with common sense and thinking of my son and his needs. I brought up my memory and said I lost count how many times I had asked when the meeting was, they laughed this was me highlighting it effects my memory I also couldn’t grasp the report as his mid term had him exceeding in some areas and expected but his end of year he was on emerging, he however did receive a green star for effort. Do they not realize that I am in that pain that after I walk I have to sleep because I have aches over my body, that I can’t no longer do some of the housework because I’m too weak. I can’t lift my son up, nor open jars or tins, or peel potatoes as I get pain in my hands. I can be in that much pain I cry.

Do people not realize what my son has been though, I began to shake, like a tremor but worse. Not a seizure a panic attack I was that fearful, scared, anxious and stressed about the future. I didn’t feel like I was being taken seriously. So the next day my partner had his boss come around for a chat I explained what our family had been though and how much my partner was doing the role of two parents whilst I was in hospital for a week. I still rely on him now as I do not have the strength memory and energy that I use to have.This was serious I needed to take more control, I needed more safety a seizure alarm I have a fall alarm but I need to get myself to safety before the tonic clonic happens and contract people send out  a SOS so to speak. They suggested speed dial, no offence when your mum is fitting on the floor a child is going to be scared and in a state of panic. When my partner came home from work on the 30th June our son was crying holding the house phone dialing whatever numbers trying to get help. I can’t have a bath by myself in case I fall if having a shower but I don’t as I have poor balance. So this is independence gone as I have a seizure in the bath I can drown, likewise with food I could choke. I get scared using my gum shield as I’m scared that if I have a seizure it would block my airways. Apart from my family and a few outsiders I felt so alone and that no one really knows what its like to live with these conditions. Just because I don’t look disabled doesn’t mean I ain’t.

So now things have reached the point of applying for PIP something I’ve never had to do before but I needed to get safety restored as much as possible especially now that I have a son with additional needs of his own. So I now waiting an outcome on this. Anyways on the 22nd of July my partner had to take me to  A&E once again because I was shaking and he thought it was a seizure but had turned out to be a stress induced panic attacks.

My mind if failing on me, I feel like a burden, if this what my life has come to I was the strong one the one that stood up and said no I ain’t having this,and that everything will be okay the rock of the family,  my memory is bad I have to write everything down, I can’t trust strangers well who can blame after my experience I have never had a lot confidence anyways always the quiet one keeping them selves to themselves. So once again I have decided to say no if I do get PIP  i am going to restore independence in my life gain control and I will make the school take my conditions seriously I’ve made them listen before I am even going to get my son tested for these conditions to make sure he hasn’t got them. Why can’t people understand, is it that hard to put yourself in someone’s shoes, but then again I guess we are too bothered with things that are beyond are control the news, listening to celebrities worrying about making money and statistics and grades etc what happened to community and caring for one another, sticking your neck out for common good. I guess there can’t be many like this or they simply don’t have the time to understand. The hospital and GP’s understood me so why can’t others who have a duty of care do the same. If I don’t get PIP then I will go down the route the doctors suggested but I have joined forums about my conditions which has helped to know that you ain’t alone knowing I can, I will , I shall be strong and get through this again. I have done it twice I can do it again

So now you know my fellow readers why I am not always constantly posting because I’m unwell or my family needs me and why my projects always remain unfinished for a while. I am starting to think stress and anxiety are my biggest triggers so am going to relax as much as possible.


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