The story of the "rosy picture".

This post, begun whilst lying in a hospital bed in May was never intended for public consumption. It was simply a bit of narcissistic catharsism to help me while away the long, long hours waiting for visiting time.

However, when I posted on Facebook in June about my colonoscopy, I was overwhelmed with private messages from women around my age, living with various aches and pains who on visiting their physicians had just been loaded up with drugs rather than being referred for tests to investigate the root cause.  Women, like me, who had been gritting their teeth and getting on with life, but slowly beginning to realise the horrendous effects that prescribed medicine was having on their bodies.

I’m not by any stretch of the imagination an “anti-drug” lobbyist, I guess I just wanted to tell my story honestly so that people understand why women like me (and there are so, so many of us, I’m guessing the vast majority of the female population in fact) paint a “rosy picture” of our lives rather than own up to the fact that we are falling apart. In a way, accepting this is part of the holistic healing process for me, the road I am slowly travelling on at the moment.

“Alone, scared, devastated, hideous, awful, excruciating pain, exhausted, abandoned - these adjectives play on a loop in my head in time to the clicking of the saline drip that is keeping me nourished.  My arms are covered in bruises, I’ve lost count of the number of times they’ve had to re-insert the cannula because my veins have collapsed.

I miss my babies, my sweet, sweet babes……..the ones I kiss, cuddle, protect….my reason for living. I still can’t see them.  The nurse thinks it would scare them to see me hooked up to the drips. All I can think about is the fact that they have been crying to their daddy every night; crying because they equate hospital with death and they are worried they are not going to see me again. It literally breaks my heart knowing this.

I feel so low.  How could I do this to them?  Why could I not be just strong enough to stay off the medication I knew deep down in my gut was making me ill? People overcome cancer, why couldn’t I just suck up the pain and get on with life like any other person could? How did it come to this? How could I let myself get to the point where I no longer have control over my bowels and a male health care assistant has to help me onto a bidet, because I am too weak to even make it to the en suite in my side room (in isolation because they can’t figure out what’s wrong with me and I could be infectious).

When my GP admitted me to hospital after collapsing in the surgery two days ago, I had to bring with me all medication I was taking.  I emptied my bag onto the bed as the nurse who was clerking me stared in horror as I pulled packet after packet (eight separate prescriptions in total) out of my bag.  She could not believe that I was prescribed this medicine by the same practitioner and was even more shocked that this was following an appointment I’d made with my husband begging the GP to find an alternative solution to taking the medication I knew deep down was making me ill.

Following the car crash in August, the lower back pain I’d been living with for some years became unbearable. There were days where I was beside myself with pain and literally wanted to do anything to get rid of it. It was (along with some other issues admittedly) keeping me awake at night, preventing me from sleeping, concentrating and just doing normal everyday activities. The doctor prescribed me Amitriptyline and Tramadol, but after the initial hit you get from taking that medicine that distracts you from the pain, I would still be in agony.

I began to think I was losing my mind, every time I went to the doctor he would prescribe me something else (Naproxen, MST, Morphine). My days when I wasn’t working would consist of: drag myself out of bed, make sure Jason got to work, dress and feed kids for school, walk kids to school, come home, make dinner, clean, wash and iron, prepare lesson plans for Monday and Tuesday working, do some PhD study, get kids, feed them, wash them, homework them and put them to bed. Tidy house then collapse in bed. Desperately try to sleep, toss, turn, pace the living room, lie down, drag myself out of bed again and it was another day…

Before I started working at my new school I’d had to have an interview with HR regarding the medication I was taking.  They told me I could not take Tramadol whilst teaching, so I would work my two days gritting my teeth (literally) through the pain, and then take pain relief on my days off.  I kept going back to the doctors as the lack of sleep and pain were really starting to wear me out both physically and mentally.

By November, everything was becoming a challenge. I was dreading every day. I remember being sat in the congregation for my Masters ceremony (supposedly a day of celebration) and literally wishing I could close my eyes and just disappear, to not feel the pain anymore, to be able to get a good night’s sleep, to just feel rested and at peace. I wondered how I could carry on when even simple things like driving my car scared me and left me in agony.

By December, I knew I was in trouble. I went back to the doctor and came away with more medication. This time anti-depressants.  The first three weeks taking them were quite literally hell on earth for me. Every day I battled with nauseousness, headaches and stomach cramps.  The week before Christmas having again been prescribed medication (this time sleeping tablets) I was still only able to get two or three hours sleep a night. I knew that I had so much to get ready for Christmas and I vaguely remember one day, in a sleep deprived, medication induced haze thinking to myself: “If I just get a good few hours sleep I can get everything done”. I remember taking two maybe three sleeping tablets and one of my dear friends calling me. I don’t remember much after that……..”

This is where my post ended I was too weak most days to be able to do anything much, so I shall finish the rest of it here:

Turns out that after talking to me on the phone for a while, my friend sensed there was something very wrong and immediately called my husband and drove around to my house. There she quickly realised I had taken too many tablets, helped me vomit and took me straight to A and E. It is thanks to her quick thinking and medical training that I am here today and I owe her an eternal debt of gratitude.

I cannot begin to describe the absolute shame I felt after that day. The hatred and self-loathing for nearly depriving my children of their mother, my husband of his wife. And all this the week before Christmas.  We went back to the doctors, but I was told to just stick with the medication, to keep going.  It was around this time that I began to lose control of my bowels. I remember Christmas Eve, prepping the veg and food and having to run constantly to the toilet. On Christmas day I was so exhausted that after serving dinner I lay on the sofa all afternoon unable to move.  All that night I had to run for the toilet.

On Boxing Day morning, as Jason was getting the kids ready to go to see family the most hideous thing happened.  I completely pooed myself!  I felt utterly devastated and was just in the process of cleaning myself (and the bed) up, when J walked into the room and I had the most humiliating experience of my life explaining to him what I was doing.  He just laughed about it (in a sympathetic way, not a cruel way!!) but as any woman will know, I was mortified. This carried on for a week until I went back to work after the holidays and people started to notice how thin I was becoming and expressing their concern. I just shrugged it off (who wants to admit to anyone that they are fecally incontinent? Certainly not me). But after collapsing from sheer exhaustion a few times, I knew my friends and colleagues were beginning to seriously worry about me. Even I began to wonder what on earth was going on with my body. I’d been led to believe by my doctor up until now that my back pain was now just psychosomatic and it was a case of mind over matter. So, after being back at work for a week and having a serious incident of diahrrea leaving me unable to stand up on my own for more than a few minutes at a time I went back to the doctors. This time, I was given some sachets of Diarhylte and was signed off work for two weeks with “depression”.

To cut a very long story short, my 10 day stay in hospital (whilst I was very grateful for the NHS care, I was very well looked after) remains the single lowest point of my life. Being hooked up to a drip, using a bidet, falling off the bidet because you are too weak to get off it, being left on the bidet with your knickers round your ankles and your bum on show for all to see cos the nurse, in her rush to make an urgent call has left the door wide open, having male nurses and health care assistants change you are all quite painful experiences to recall even now, three months down the line.

Only being allowed to see your children twice in those ten days after being apart from them for four days, only being able to have visitors twice a day (for 45 minutes each time),  going days at a time without being able to see your husband because he is caught in a quandary of looking after the kids whilst trying to hold down his job, having to have somebody change me, being too weak to even type text messages and just having to send pictures to explain what was going on.

Being stuck on the toilet having collapsed against the door knocking out the cannula, watching the blood pour out and pool onto the floor but being too weak to ring the bell to get someone to help. Having to have your best friends change you, wash you, hold your hand whilst you’re given your fifth daily injection and the nurse tries to find a “good vein” one that isn’t collapsed. Seeing your mothers look of shock and horror on her face as she has to look at the skin hanging off the bones of your six and a half stone body while she washes you.

All these memories still haunt me to this day, because after weeks and months of tests, the only thing I know for sure is that the medication I was given to help my back pain has caused havoc on my hormones and digestive system and that it’s not cancer. (Thank goodness and I am very grateful for this don’t get me wrong).

Whilst I am extremely grateful that my hospital stay resulted in a diagnosis for my back pain (cracked ribs and sacrolitis and after shelling out over three and half grand for private treatment I am on the road to recovery with that), I can’t help thinking that a range of other problems I am struggling with to this day could have been avoided if I’d been referred for investigations sooner.

I am determined, however, that I will not be beaten by this as I know hundreds and thousands of other men and women struggle with much worse, but I have to tell you that the constant diahrrea is starting to become old now! The other morning Jason woke up and said to me:

“Sweetheart, I had the strangest dream that someone was scrubbing the bed.” I had to laugh as I told him it wasn’t a dream.

I have to plan every journey or trip around where toilets are.

I have to cut short meals out with friends (recently two occasions where my dashing to the loo has made us cut our night short as I literally didn’t want to be caught short in public).

Or the time where I pooed myself during Church whilst wearing a white skirt.

Last week, I had to stop in the middle of my research interview for my PhD and run for the toilet.

On Sunday, I was literally playing the sacrament hymn as fast as I could so I could run for the toilet as soon as possible.

Admitting that you have lost control of your bowels, that you have to wear attractive (!) plastic pants on “bad days”, that some days you are just too exhausted and have to ask your husband or family to help out is, for someone like me, traumatic. But it’s also why I went for so long hiding it and pretending everything was ok, and why so many, many women also hide their pain both physical and mental.  We want to be strong for our husbands, our children and our friends because we feel their worlds will fall apart without us. We lie to ourselves and those around us, that if we can just grit our teeth and carry on we can maintain the “rosy picture”.

The truth (that I am just plain scared stiff and frightened that I’ll end up back in hospital away from my husband and my kids) is hard for me to admit, and so I’ll put up all my defences and all my guards because I don’t want anyone to see me weak and vulnerable. I bet there are thousands if not hundreds of thousands of women out there who feel the same way I do, and we all deal with our pain in whatever way we can to get through it. Each one of us is different and each one of us will do what we need to do to get through and to carry on. For some, like me, painting the “rosy picture” is the best way of coping and getting through the pain, others however, will have their own coping mechanisms and ways of getting through.

This is MY reality right now and it’s mentally and physically exhausting, and some days you’ll see me and I’ll have a smile on my face and you’ll think I’m wearing a nice dress and looking well, but secretly I’ll be wearing my attractive plastic pants! Other days you’ll see me and you’ll know how I feel cos I just won’t be able to hide the pain, but I’ll lie to your face and tell you I’m ok because  I’ll be damned if I let you see the picture that isn’t rosy. Then there will be other days, days where I am simply on my knees because I’ve been up all night on the loo or being sick and I’ll just be human, and I’ll snap and I’ll be mean and cruel and say unkind things because I’m just tired and worn out.

This is MY reality. And each of us deals with OUR OWN reality daily. And it is because I know that so many of you are dealing with your challenges in a far more graceful and dignified way than I that keeps me going. So THANK YOU, from the bottom of my heart thank you, to all those women that were kind enough to share their own traumatic experiences with me, who have helped me realise that it is “ok” to be vulnerable and to ask for help.