Friday, 22 October 2010

A Wasted Week

Thank God it's Friday.

I've spent all week in bed, alternately vomiting, writhing in pain or peering back at the world through an opiate haze. Friends have taken my 6 year old to school, other friends have picked him up for me. His homework hasn't been done for two weeks. My Mum has spent all but one day at my house looking after me and my toddler (not to mention my 88 year old Dad who's almost totally immobile now.) My husband has jigged his work around to breaking point - yesterday he just couldn't come home early and I had to cook spaghetti bolognese while running to the loo every ten minutes or so to be sick. In the end I gave up and gave myself an injection (opiates and anti-sickness drugs) - something I hate to do when I'm alone with one of the boys.

A chronic illness is like a staircase that you just keep climbing up and down forever.

After surgery, all cleaned out and zipped back up, I thrive. I put on weight, I notice the chasm where the pain used to be almost every waking moment. I have a little more energy, can eat with a little less caution, my mood lifts, oh so slowly and I enjoy the clear fresh mind of an opiate free day.

One by one though, I start to step back down the staircase - one step at a time, each step a defeat.

A niggle of pain here and there. Step
A bit queasy after Sunday lunch. Step
A few pound lighter. Step
Pain all day. Step
Can't eat. Step
Vomiting. Step
Weight falls again.
Pain every day. Step
Can't get out of bed. Step

Yesterday, I took one of the steps I always find the saddest in the whole cycle. I had to switch from having most of my medications orally to having them by injection. My bowel is just too sulky at this stage to absorb enough for the meds to have any effect.

Eau de Junkie starts to waft through our house. Packets of needles and syringes, hidden on high shelves out of the way of the kids. Hiding in the bathroom so they don't see the needles or the blood. Sore bruised legs, stiff and inflamed from constant punctures, trying to read a story, my mind addled with cotton-wool highs, trying not to read the same sentence more than once.

My two year old endlessly comes to the side of my bed, pushes his little face right up to mine, his enormous blue eyes wide "R'you fine Mummy?" He asks, over and over, willing it to be true. Last time Mummy spent too much time in bed, she disappeared for five weeks and he didn't see her. "I'm fine sweetheart" I reply, with much more confidence than I feel. Happy, he skips away, only to come back a few minutes later, his face all concern, "R'you fine Mummy?

The 6 year old plays up. He knows more of what is to come. He alternates wildly between taking on Daddy's role when he's out at work - tucking me up in blankets, getting me drinks, looking after his baby brother and pushing his luck - answering back, ignoring me - desperately trying to irritate me out of my troubles.

Despite all of this, you might just see me, pushing a trolley around the supermarket or taking the kids to the park. There might be days when I put on some make-up, push my shoulders back and look quite normal. I park with my disabled badge and see the disapproving looks of the local retirement-squad.

I could be your neighbour, or your work colleague or your teacher.

And you might never know.

24 comments:

  1. Just know that more people than you realise are with you everytime you take a step up or down! xxx

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  2. My heart goes out to you and the many in similar situations, I'm so sorry we failed to stop the coalition of evil who like to put scrounger labels on anyone less fortunate than themselves. I hope you can take a little comfort knowing that there are some of us out here who understand and will support you whenever we can.
    xxx

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  3. Great to know guys, thanks for commenting.

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  4. So sorry for all that this rubbish illness entails .... and your boys sound lovely.... Just the right amount of concern and cheekiness.

    It is not fair that you have to deal with people's unthinking predjudices as well.... not to mention scares from Gideon's CSR!

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  5. Hey Sue,

    Your week was not wasted.

    In the last week your blog has taught me more about the problems confronting those with extra health needs than I had previously known. In addition, the media is now picking up on these types of stories. Only today an MS sufferer confronted Clegg. The slow burn effect, that hard working blogs like your own does, contributes greatly to the cause of people in similar predicament to yourslef but who are les able/confident to speak out!

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  6. I think back to all those months when I read your contributions elsewhere, not having any notion of what was going on. I suspect many of us do not realise what may be happening behind another front door.
    I confess I look daggers at everyone who parks in mother and baby or disabled, but at least I am not discriminate - I mistrust them all!

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  7. Brilliant post Sue.
    My son is officially disabled. He had a serious brain haemorrhage when he was born and had to
    have a shunt fitted. We were told at the time there would be 'consequences' which could be
    anything from not being able to walk to something minor. Well, he's 3 now and we can't see any symptoms. So is he well or is he disabled? Does the fact that he has a shunt which will need to be changed regularly and which keeps him alive mean he's disabled? Just as you say in your post. After you have surgery or you feel well enough to go shopping does this mean you're no longer sick?
    The whole concept of 'sick' or 'disabled' and 'well' is not as simple as people think.

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  8. Your condition sounds pretty miserable. Here's a few ideas.

    I expect you've investigated solutions, but yoghurt, garlic and cannabis are all good, though not necessarily together :) Glutens and grains are bad.

    Anyway, the Coalition's tightening up on benefits is designed to catch able-bodied people who can't be bothered to work, rather than yourself.

    My wife doesn't work, but we don't claim benefits because it just seems the natural order of things to us.

    You could go self-employed, and make money from adverts on this blog. That way you wouldn't need benefits.

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  9. If it's any comfort to you, through you work on this blog you have probably achieved a lot more in a 'wasted week' than most people achieve in a good year.

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  10. Hi guys. I did try to reply yesterday, but after typing a very long response agonisingly slowly, I lost the lot. Grrrr.

    Eoin made a good point. The blog really has been a terrific success, thousands of visits, taken on by some of the biggest blogs on the net and some very prominent politicians. Most importantly, I've had lots of tremendous comments from people like me and that made it all worthwhile. Eoin mentions the MS sufferer and I've noticed, though it could be coincidence, that the word "scrounger" is cropping up all over the place as a criticism of the coalition.

    Blackburne - I've had crohn's for 27 years, I've tried everything from emu oil (?) to faith healing. I didn't claim for many years, but it became a necessity when my husband had to take a lower paying job to be more flexible in his care abilities. As for going self employed, my problem is reliability, running your own business often requires the person to be even more hard working and reliable than being employed. Still, your comment about advertising might work out. You could all promise to click on 10 ads a day for me! I'd be rich, lol.

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  11. I'd click on some ads for you. I'm not exactly sure how it works. I thought I'd seen somewhere that screen views counted, but maybe not so much as clicks? I'm sure someone could enlighten you.
    Anyway, I'm sure I wouldn't be the only one who'd help.

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  12. Thanks Pete, I wonder if they'd be suspicious, lol

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  13. Pete, just in case you ever come back to this, how do you know these things about crohn's?
    I decided too that garlic, yoghurt and cannabis would make a very nice raita!

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  14. I am here to give my testimony about Dr SUKU who helped me in my life, i want to inform the public how i was cured from (HERPES SIMPLEX VIRUS) by Dr SUKU,i visited different hospital but they gave me list of drugs like Famvir, Zovirax, and Valtrex which is very expensive to treat the symptoms and never cured me. I was browsing through the Internet searching for remedy on HERPES and i saw comment of people talking about how Dr SUKU cured them. when i contacted him he gave me hope and send a Herbal medicine to me that i took and it seriously worked for me, am a free person now without problem, my HERPES result came out negative. I pray for you Dr.SUKU am cured you can also get your self cured my friends if you really need my doctor help, you can reach him now:greatsukusolutiontemple@hotmail.com or call his Mobil number or you call him telephone:+234874839242 THANK YOU FOR YOU HELP TO CURE MY (HERPES SIMPLEX VIRUS)AM SO GRATEFUL,I WILL ADVICE YOU FRIENDS HIS WILL HELP YOU TO SOLVE YOUR PROBLEM EMAIL:greatsukusolutiontemple@hotmail.com

    ReplyDelete
  15. I am here to give my testimony about Dr SUKU who helped me in my life, i want to inform the public how i was cured from (HERPES SIMPLEX VIRUS) by Dr SUKU,i visited different hospital but they gave me list of drugs like Famvir, Zovirax, and Valtrex which is very expensive to treat the symptoms and never cured me. I was browsing through the Internet searching for remedy on HERPES and i saw comment of people talking about how Dr SUKU cured them. when i contacted him he gave me hope and send a Herbal medicine to me that i took and it seriously worked for me, am a free person now without problem, my HERPES result came out negative. I pray for you Dr.SUKU am cured you can also get your self cured my friends if you really need my doctor help, you can reach him now:greatsukusolutiontemple@hotmail.com or call his Mobil number or you call him telephone:+234874839242 THANK YOU FOR YOU HELP TO CURE MY (HERPES SIMPLEX VIRUS)AM SO GRATEFUL,I WILL ADVICE YOU FRIENDS HIS WILL HELP YOU TO SOLVE YOUR PROBLEM EMAIL:greatsukusolutiontemple@hotmail.com.

    ReplyDelete
  16. My Name is Rebert Edward,Am from United State of America, I want to testify of how i got cured from HIV/AIDS.I never think I can live long again and am so grateful about this great man called DR.Ofemo who cured my HIV/AIDS last month. I was in a great pain so I told one of my best friend called Monica; she told me that there is a great spell caster that can cure my HIV. I asked her if she had his email address, she gave me his email and I emailed him. He talked to me and he perform the necessary rituals and he told me that after two weeks I should go for a test and Which I did, when the doctor told me that am now an HIV negative, I couldn’t believe myself, I went to see another doctor the result was still the same, I was human on planet earth again, so I emailed him and thanked him. Please if you are having a similar problem please visit him/contact him on email:drofemospelltemple@gmail.com to get Perfect healing for all kind of sicknesses and diseases such as HIV/AIDS, Cancer, Herpes, Pyle, Ash- man, Ulcer, syphilis, Diabetes, pneumonia, flu, heart problems, liver problems, blood disease, eye problem, kidney problem, and brain problems, Fibroid e.t.c Contact this great spell caster,email via drofemospelltemple@yahoo.com or his web/site: http://drofemospelltemple.wix.com/dr-ofemo or cell number +2348163387496 his web/site http://greatofemospelltemple.webs.com/

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  17. My Name is Rebert Edward,Am from United State of America, I want to testify of how i got cured from HIV/AIDS.I never think I can live long again and am so grateful about this great man called DR.Ofemo who cured my HIV/AIDS last month. I was in a great pain so I told one of my best friend called Monica; she told me that there is a great spell caster that can cure my HIV. I asked her if she had his email address, she gave me his email and I emailed him. He talked to me and he perform the necessary rituals and he told me that after two weeks I should go for a test and Which I did, when the doctor told me that am now an HIV negative, I couldn’t believe myself, I went to see another doctor the result was still the same, I was human on planet earth again, so I emailed him and thanked him. Please if you are having a similar problem please visit him/contact him on email:drofemospelltemple@gmail.com to get Perfect healing for all kind of sicknesses and diseases such as HIV/AIDS, Cancer, Herpes, Pyle, Ash- man, Ulcer, syphilis, Diabetes, pneumonia, flu, heart problems, liver problems, blood disease, eye problem, kidney problem, and brain problems, Fibroid e.t.c Contact this great spell caster,email via drofemospelltemple@yahoo.com or his web/site: http://drofemospelltemple.wix.com/dr-ofemo or cell number +2348163387496 his web/site http://greatofemospelltemple.webs.com/..

    ReplyDelete
  18. My Name is Rebert Edward,Am from United State of America, I want to testify of how i got cured from HIV/AIDS.I never think I can live long again and am so grateful about this great man called DR.Ofemo who cured my HIV/AIDS last month. I was in a great pain so I told one of my best friend called Monica she told me that there is a great spell caster that can cure my HIV. I asked her if she had his email address, she gave me his email and I emailed him. He talked to me and he perform the necessary rituals and he told me that after two weeks I should go for a test and Which I did, when the doctor told me that am now an HIV negative, I couldn’t believe myself, I went to see another doctor the result was still the same, I was human on planet earth again, so I emailed him and thanked him. Please if you are having a similar problem please visit him/contact him on email:drofemospelltemple@gmail.com to get Perfect healing for all kind of sicknesses and diseases such as HIV/AIDS, Cancer, Herpes, Pyle, Ash- man, Ulcer, syphilis, Diabetes, pneumonia, flu, heart problems, liver problems, blood disease, eye problem, kidney problem, and brain problems, Fibroid e.t.c Contact this great spell caster,email via drofemospelltemple@yahoo.com or his web/site: http://drofemospelltemple.wix.com/dr-ofemo or cell number +2348163387496 his web/site http://greatofemospelltemple.webs.com/

    ReplyDelete
  19. All these post about HERBAL MEDICINE and spell casters are scammers and fake trying to collect money all in the name of HERPES cure and when you contact them, they will be asking for your name, pictures, country, phone number, occupation and when you have given them all the information, they will be asking for money. I was once suffering from GENETIC HERPES and i spent a LOT OF MONEY going from one herbal doctor to another but they all scam and take my money away until i came in contact with this powerful one called Dr. IGUIDO who cured me from Herpes with his herbal medication , after doctor IGUIDO has finished preparing the herbal medicine, he asked me to send him my residential address, so that he will send the herbal medicine to via D.H.L so i did. 2 days later, i received the herbal medicine and i had to follow the instructions he gave to me on how i will apply it. 2weeks later i went to hospital for test and according to the test done by the Medical doctor Frank it stated that i was cured. So viewers be wise and beware of fake spell casters and fake herbal doctors, they are all over the internet trying to steal from poor people. I will drop you the email of this powerful herbal doctor just in case you wish to contact him for iguidospellhome@hotmail.com.

    DOCTOR {IGUIDO} CAN AS WELL CURE THE FOLLOWING DISEASE:-

    HERPES
    LASSA FEVER
    GONORRHEA
    HIV/AIDS
    LOW SPERM COUNT
    MENOPAUSE DISEASE
    EPILEPSY
    ASEPSIS
    CANCER
    ANXIETY DEPRESSION
    PREGNANCY PROBLEM
    SHORT SIGHTEDNESS PROBLEM
    Male menopause
    Menopause – male
    Menopause – peri
    Menstruation problems
    Mercury Poisoning
    Migraine
    Miscarriage
    Mites (demodex mites)
    Mites (scabies mites)
    Motion sickness
    Mouth ulcer
    MRSA
    Multiple sclerosis
    MUSCLE cramps
    Myodesopsia
    Stroke
    He can as well cast and remove spell

    Contact Emil:iguidospellhome@hotmail.com

    ReplyDelete
  20. Am Juliet Dickson from Sweden I want to share a testimony on how this great man Dr Suku help me to heal my herpes virus is the solution to herpes cure,Since last 4 months I have being a Herpes patient.it was confirm I have be in several hospital but no one can cure it one day I was browsing through the Internet I saw a testimony on how Dr Suku from Africa healer and i saw so many testimony on blogger how is cure a lady called Grace and i asked her if she was cure by Dr Suku,what she said was yes that is heal and be free for herpes,she told me that there is a great spell caster that can cure my herpes Virus,I asked her if she had his email, she gave me his email, so I contact him and i told him I have Herpes virus,and I asked for solutions, he started the herbal remedy for my health, he sent me the medicine,and i start taking the medicine as prescribed by him and 2 week later i was cured from HERPES, Dr. Suku truly you are great healer, do you need his help also? Why don't you contact him through greatsukusolutiontemple@hotmail.com or his cell number +2348074839242,I’m the happiest girl in the world thank you Dr Suku he cure any type of disease HIV/AIDS,CANCER, ALS, Hepatitis B, HERPES, PVC/ through his via email;greatsukusolutiontemple@hotmail.com

    ReplyDelete
  21. Am Juliet Dickson from Sweden I want to share a testimony on how this great man Dr Suku help me to heal my herpes virus is the solution to herpes cure,Since last 4 months I have being a Herpes patient.it was confirm I have be in several hospital but no one can cure it one day I was browsing through the Internet I saw a testimony on how Dr Suku from Africa healer and i saw so many testimony on blogger how is cure a lady called Grace and i asked her if she was cure by Dr Suku,what she said was yes that is heal and be free for herpes,she told me that there is a great spell caster that can cure my herpes Virus,I asked her if she had his email, she gave me his email, so I contact him and i told him I have Herpes virus,and I asked for solutions, he started the herbal remedy for my health, he sent me the medicine,and i start taking the medicine as prescribed by him and 2 week later i was cured from HERPES, Dr. Suku truly you are great healer, do you need his help also? Why don't you contact him through greatsukusolutiontemple@hotmail.com or his cell number +2348074839242,I’m the happiest girl in the world thank you Dr Suku he cure any type of disease HIV/AIDS,CANCER, ALS, Hepatitis B, HERPES, PVC/ through his via email;greatsukusolutiontemple@hotmail.com.

    ReplyDelete
  22. I've had HEPATITIS B problem over 4 years. I tried everything, of course I went to the doctor. about a hundred times, and though about my Family, I know my Family will face a serious problem when I’m gone, I lost hope and I wept all day, but one day I was surfing the internet I found Dr.Suku contact number. I called him and he guided me. I asked him for solutions and he started the remedies for my health. Thank God, now everything is fine, I’m cured by Dr. Suku herbal medicine, I’m very thankful to Dr. Suku and very happy with my hubby and family.his email greatsukusolutiontemple@hotmail.com or contact his hot line:+2348074839242 so any type of disease HIV/AIDS,CANCER, ALS, Hepatitis C, PCV.. HERPES,through his via email;greatsukusolutiontemple@hotmail.com

    ReplyDelete
  23. I've had HEPATITIS B problem over 4 years. I tried everything, of course I went to the doctor. about a hundred times, and though about my Family, I know my Family will face a serious problem when I’m gone, I lost hope and I wept all day, but one day I was surfing the internet I found Dr.Suku contact number. I called him and he guided me. I asked him for solutions and he started the remedies for my health. Thank God, now everything is fine, I’m cured by Dr. Suku herbal medicine, I’m very thankful to Dr. Suku and very happy with my hubby and family.his email greatsukusolutiontemple@hotmail.com or contact his hot line:+2348074839242 so any type of disease HIV/AIDS,CANCER, ALS, Hepatitis C, PCV.. HERPES,through his via email;greatsukusolutiontemple@hotmail.com his website http://greatsukusolutiont.wix.com/dr-suku

    ReplyDelete
  24. I was diagnosed with (HERPES SIMPLEX VIRUS) for about 2 years so I can relate to people who have the cured. No medications or treatments ever really did anything for me (i tried them all no one work. but I was actually able to completely cure HERPES naturally after countless hours of online research. What worked for me is as follows: I saw Dr Okuns Information online that he normally cure and treat disease and infirmities with his Herbal Medicine, I never really believed the people who where recommending him thou i saw on blog about 6 people where also testifying on how they were cured by Dr Okuns,and still Ellen recommend Dr Okuns who uses herbal medication to cure HERPES GENITAL VIRUS and gave me his email, so i mail him He told me all the things I need to do and also give me instructions to take, which I followed properly. Before I knew what is happening after two weeks the HERPES GENITAL VIRUS that was in my body got vanished . so if you are also heart broken and also need a help, you can also email him: herbal.home247@yahoo.com if you are infected with any disease like HIV, AIDS,CANCER, HERPES.PVC, or any other disease you can also be happy like me by contacting Dr Okuns through his via email: herbal.home247@yahoo.com or Call his line: +2348078467513

    ReplyDelete