Life or existing ?
I lay in bed all day in absolute agony taking enough tablets to knock most people off their feet for a week …
I take at :
7am
1 X Zomorph 30mg
1 X Zomorph 10 mg
1 X Fluoxetine 20mg
2 X Gabapentin 300mg
1 X Omeprazole 20mg
1 X Propanolol 40mg
1 X Mefanemic acid 500mg
Oramorph as and when needed for pain relief
2pm
3 X Gabapentin 300mg
1 X Mefanemic acid 500mg
1 X Propanolol 40mg
Oramorph as and when required for pain relief.
8pm
4 X Gabapentin 300mg
1 X Mefanemic acid 500mg
1 X Propanolol 40mg
1 X omeprazole 20mg
1 X hydroxyzine 25 mg
3 X amitrytipline 10mg
1 X Zomorph 30mg
1 X Zomorph 10mg
Oramorph as an when required for pain
That’s 26 tablets if my addition is correct.
I have ME . My ME is so severe is has me bedbound for 95% of the day . My day starts at 7am when I take my first lot of medication. I try and eat little and often to help settle my stomach, that means things like dry crackers or biscuits. I then try and stay awake to say bye to my wave my Princess off to school. Sometimes I try and keep up with my favourite shows , I don’t get to watch much live and more . Chances are I have fell asleep before the show finishes .
I try and watch a lot of comedy , keep my spirits up and I do enjoy a giggle . I wake in pain around eleven where I try and manage to eat a little . I will then lie in darkness on my back of my side as that normally helps with managing the pain . I sometimes use a TENS machine to help with pain too . I then have my afternoon medicines and then normally watch reruns of How I met your mother or Big Bang theory till my Princess comes home to tell me of her day . I also try and catch up on the papers or read Buzzfeed on my phone . Sometimes I will spend time with our dog , he likes to play pull but of course against me he always wins . I feel terrible not being able to spend more time with him . On a good day I get to lay on the couch in our front room , it is only across the hall way from our bedroom . Not far to walk . I then get to have Gerrard lay on the floor besides me and the occasional face lick to tell me he loves me .
My hubby normally gets home at 7pm and he and our Princess will eat together or hubby will get alongside me in bed while he eats . I don’t really eat much throughout the day anymore . As I have Laryngitis right now I am eating lots of ice lollies and ice cream . On rare occasions we have a take out and we will all sit on our bed to eat and watch something funny . Hubby and I then try and put a film on or watch a bit of tv , maybe catch up with something we missed . At 10pm Hubby will take the dog out for a walk , by the time he gets back I am normally asleep .
That is my life . Trapped in my bed by an illness which has destroyed my life . I am no one to anyone . I’m not a wife to my husband or a Mother to our Princess. I’m no ones friend . I’m not a beloved daughter or sister . If I were to breath my last today just what impact have I made ? I can’t work . I have no influence. I have no one calling me to see if I am OK , if I need anything. No one is offering to get me out for the day or keep me company . The only company I have is through social media . What would happen to my life and my mental health if I deleted my social media accounts today ?
I know I can’t keep in touch with others so I appreciate some will say I don’t deserve contact as I don’t contact anyone either . I cant do contact over the phone as I get muddled and confused and feel stupid when I forget words . I try and text people or invite people up . I know I am not much good to anyone , not exactly the best company .
Right now my life is very dark and I think very dark thoughts . I think of the end a lot . I know the prices for Dignatis, I have relayed every single senario in my head . Ways , how to do it .
Today I read about a Teacher who had come to the end , in her article it talks of family and their love . How much her Father adored her and thought she was perfect in every way . It started me thinking .
Why do we grieve so hard for people who we never told in life just how loved they are ? Why do people end their lives convinced that no one liked or loved them ? Why do I lay here feeling hopeless, fat , not worthy , a failure , failure as a mother , a daughter , a wife ? If I am loved why don’t I feel it ?
Why did that poor teacher die feeling that she had no hope and yet when it is too late her family write in a newspaper about how much she was loved .
Why don’t we do that in life ?
Why do we not find the time to tell our loved ones how we feel ? Why is it an assumption that people just know ?
I live my life in my bedroom , alone all day long . Do I feel loved ? No I don’t . Do i feel like I matter ? No . Do I feel like lives would be better without me in it ? Absolutely, yes !
I do try and keep in touch . I try to be there . I can’t do a lot but I can listen . If anyone of my friends or family needed me any time night or day , my door is absolutely open . My illness doesn’t change that . I have welcomed friends and family a bed , made them welcome . I tell people to make themselves feel at home . Granted I can’t make you breakfast or cook a meal but you can always sit besides me or lay with me and I will listen .
I have an illness which has destroyed my life, yet this year I have seen 3 medical professionals aside an emergency ambulance taking me to hospital .
I lay in bed unable to move in pain . On top of my ME I have Endometriosis which causes me pain on top of my ME . I have suspected rheumatoid arthritis which will also need treating in the future . This leaves me unable to type , open bottles , I can’t even put on a pair of socks . Do you think my future looks bright ? Do I think that in the future I will be able to work again or go out with friends, out for dinner with my hubby ?
People tell me of friends who had ME and they done this or that and now they are fine . I get asked if it isn’t Bi polar ?????? Or depression ???????
Let’s just think of those things for a moment . I have been diagnosed with ME by a specialist . I have been honest with you all about the medication I take . One specialist in ME once declared that in a choice between suffering with ME or end stage cancer or AIDS they would choose Cancer or AIDS . This specialist had worked with patients of all .
Does David Cameron give a shit about people like me ?
Does the medical profession give a shit about people like me ?
Unfortunately the answer to both is no .
My life for me is no longer a life , it is an existence . I am on the sidelines watching others . I get to watch , that’s all I can do .
I don’t feel loved or needed . Lives around me go on .
If you read this I ask you one thing . If you have someone in your life that you love , tell them . Love should not be assumed or something we tell other people we feel ! If you love someone tell them right now ! Make them feel special . Make them know just how important they are to you !
Don’t ever leave love be assumed . Don’t ever have others read of your love in a magazine or newspaper article after loss .
Like the article today in the mail about the teacher feeling a failure . Do you think that if that young girl knew of all the love their was for her in the world , would she really have felt so low ? Obviously I don’t know the full story yet did she fail or was it those around her ?
Are we really going to lose others in the world because they felt they had no where to go , yet people weep for them when they are gone ?
Shouldn’t we just give all we can , love as hard as we can .
It doesn’t matter if you love someone and you couldn’t live without them if they don’t know .
In this time of ME Awareness and mental awareness isn’t it right that we lay all our cards on the table . Being strong isn’t always the best thing . Trust me I have tried to be strong and it has got me no where . When you are strong people think you are ok , you are coping . I can promise you right now , I AM NOT !