Rainbows and Unicorns

I am going to let you in on a secret, I don't shit rainbows or unicorns. Nor do I manage to spend everyday with a grin plastered on my face. Life with chronic illness is not something I tend to smile about and yet again it seems the old disability porn meme is doing the rounds on Facebook. The one that says "the only disability in life is a negative attitude". I would love just one of these idiot posters to spend 24 hours living my life and see how positive they feel.

I have been staring into the abyss for a while now, for a few months I have been trying to kid myself that my mood would get better, that I would indeed get a good nights sleep and things would improve. I have practiced every self-help technique I have ever been taught but currently I seem to teeter between a feeling of raging premenstrual syndrome (ANGRY RACH!) or sadness, the kind that makes your heart ache. I would love to be melodramatic and say I have spent days in tears, I haven't, I don't have the energy for it. I did have a couple of days of easy tear shedding a few weeks ago when hubby was on holiday and that was only after I confessed to how bad mentally I was feeling.

I have written about my battles with depression before, I had smugly thought that I had won and I would never end up back there. How wrong I was. Since August I have faced a battery of testing, a muppet of a consultant (the one that told me I was spending too much time on the internet looking up syndromes to have) and a new diagnosis to add to my ever-growing collection of the ones I already own. It's funny how the diagnosis or a new diagnosis can send you closer to the edge than you've been in a while. 

The absolute icing on the turd cake that is my life, was finding out that my driving licence had been revoked due to the diagnosis of Meniere's disease. Despite the fact I get several hours notice of the attacks because they aren't under control I am deemed no longer safe to drive. It grinds my gears (pun intended) that I know that there are many people out there driving who haven't informed the proper authorities of their medical conditions. I know the DVLA are very hot on vertigo / blackouts now due to the terrible tragedy last year in Glasgow, where a refuse lorry driver crashed into pedestrians killing six (more info here). I understand why I am not allowed to drive, it doesn't mean I have to like it.

Lack of sleep has also had a detrimental effect on my mental health. I haven't slept properly since 2011 when hubby had his accident ( a drunk driver hit him, when he was on his way to take the dogs out). The crash also left me with a lot of anxiety whenever he has to drive anywhere alone, oddly enough his journey to work doesn't bother me, just everything else. I am a bag of nerves whenever he leaves the house and make him ring me when he arrives at his destination. 

Pain has also been a major cause of lack of sleep, I tend to get breakthrough pain because I don't move around very much whilst asleep (as in changing positions). Up until recently I was lucky if I got 4 hours at a stretch most nights, once every few weeks I would sleep 10-14 hours and end up feeling worse than after a 4 hours sleep. Not sleeping drags you down, it is terribly lonely being the only person awake for hours on end. Waking up at 3am means it is a very long day and there is no evening for me as I am back in bed by 7pm and most nights asleep by 8pm. 

All these things combined meant that no matter how hard I tried I just couldn't lift my mood. I am a consummate actress around friends and family, no one would really know how bad I felt inside because for the short time I spent with them I could pull off my usual wise cracking self. If anyone suspected I wasn't my usual chirpy self it could be passed off as feeling rough or being in pain. However I knew things were getting bad when I no longer really wanted to talk to anyone outside of my family. I have a habit of withdrawing deep inside my head when things are tough. I don't make an effort to socialise because I can't be bothered to pretend that everything is ok. I put off visits from friends and basically become pretty shoddy at staying in contact with people. Even with hubby I start to get very quiet, mostly because I don't want to snap at him because the issue isn't him its me. In the grand scheme of things what does it matter if certain jobs haven't been done by my self-imposed deadlines? I become frightened to speak as I may give myself away. I hate feeling like a burden to people. Over the last few months I have felt more and more that I couldn't ask for help until one day I couldn't suppress it any longer.

When you have lived with depression, you learn the danger signs. They can be very subtle and can take you a little while to pick up on them but they are there. Mine started with getting less and less sleep, then the feeling of sadness crept in, one that wouldn't go away. Then I start spending money to cheer myself up. It is usually gifts for others as if I alone am not enough to please them. Then the self loathing starts with a vengeance, I start feeling like I am a failure because I have put on weight (comfort eating and wacky hormones), ugly because of the new facial hair that has sprouted and the teenage skin I suddenly acquired. A failure in so many ways that my inner voice of criticism literally doesn't shut up from the minute I wake until the minute I go to sleep. It is a lonely place inside my head and it seems so stupid to retreat there but then that's depression for you.

Thankfully I have identified the signs early, probably the earliest I have ever done so. I would class myself as mildly depressed, there are no thoughts of suicide or self harm but eventually they would have surfaced if I had let it go on much longer. I have visited my gp, who I think would have guessed this was coming as on the last two telephone conversations with him I have ended up in tears. He has placed me on an antidepressant that is known for its sleep inducing qualities. I have only been on it a few days but I am already experiencing better quality sleep, the kind where you wake up and feel like you have slept. My mood has lifted a little, which could have been caused by sleeping better as the medication isn't supposed to reach its full effect for 7-14 days. My gp did say to me he felt with a few decent nights sleep it would take the edge off and it has. When you haven't had a refreshing night's sleep in 4 years you forget what it's like. I have been waking up in the morning and not feeling groggy. I can't remember the last time I felt like that on waking.

I have to go back and see the gp in a couple of weeks, a basic check to see how I am feeling and if the medication is working. I have been told to ring him immediately if things aren't going well. Things are ok, is all I can say at the moment. I am hoping in a few weeks I will be able to say things are good.

It's very difficult when you have a chronic illness to be able to address depression by the normal self-help means diet and exercise. Mobility issues and pain mean all but the gentlest of exercise is completely out for me. My diet is very restricted and when you feel depressed you can end up bingeing on junk food in an attempt to make yourself feel better for the short amount of time you are eating it. At the moment I am not feeling like eating (probably the new medication) nothing makes me think "oh I fancy eating that". I am still hungry but the desire to eat has gone, which for me is good as I don't want to end up bingeing all the time. I have to eat three times a day due to the Betahistine so I force myself to eat then. The pleasure of eating has temporarily gone and I am ok with that.

One of the main reasons I shied away from asking for help from my gp was the stigma I have faced in the past with having mental health issues on my medical records. Too many doctors when I was struggling for a diagnosis saw the issues from ten years earlier and decided that my illness was psychological and not physiological. I didn't want that happening all over again however there came a point where I realised I couldn't keep trying to soldier on. Nothing was going to change unless I got help. 

So I urge those of you who are struggling right now to ask for help, there is no shame in saying you need assistance. Chronic illness is a lonely world to inhabit, many of the things that get me down can't be changed but I can learn to adapt to a new normal.

Addiction v Dependence

I will put my hand up and tell you right now that I am addicted to living a pain free life as possible. Sounds sensible doesn't it? Sounds almost like a human right to be free from pain. So why do the majority of people (including medical professionals) still assume that Morphine or any opiate is a medicine only the terminally ill should have access to?

I should probably admit my other addictions just so I am being totally honest nicotine is one (a hanging offence I know), Caffeine is another and lastly Food. I can over eat in a way that would make a competitive eater think he or she had just had a "snack". My favourite bingeing foods of mine are jam tarts, danish pastries and jam doughnuts (jelly doughnuts for my friends across the pond!). On a binge I can probably consume close to the body weight of a small toddler, luckily binges are few and far between now and are usually triggered by extreme stress.

I want you to take a long hard look at your own life and think about what it is you couldn't live without. I could live without everything I mentioned as long as I could lead a pain free life.

I keep my consumption of morphine reasonably quiet not because I am ashamed that I need to take this medication to get out of bed and be able to function but because of the ignorance in the general population about opiate painkillers. Most people have heard of morphine but they associate its use with terminally ill patients and mainly those dying of cancer. 

Mention that you take morphine or any opiate and 9 times out of 10 you are greeted with "but you will get addicted" I want to scream back "what's wrong with being addicted to a pain free / less pain existence?". I dont say anything to them when they mention addiction because I can already see them looking at me as if I am some sort of junkie and they are checking that they still have their handbags and wallets. If that is their attitude to the revelation I am on morphine then there is no point trying to explain the difference between addiction and dependence. Their minds have already been made up.

An addiction to morphine or any opiate means you use the drug to get high. Your whole life revolves around the next hit, remember the film "Trainspotting"? I can tell you now I have never had to smuggle my morphine inside any of my body cavities or dig a packet of pills out of a poop filled toilet! I have never stolen to support my use of prescribed morphine, my arms are not filled with track lines. I do not spend my days in a drug addled haze. I am not a junkie.

Dependence is a completely different kettle of fish. Dependence means my body will go into withdrawal if I don't receive my dose of morphine as an addicts would. I don't get "high" using it, I don't spend every hour of everyday craving more. I don't take more than I have been prescribed and I don't run out of my medications before my next prescription is due. I take my prescribed dose and that is all. Its not used to blot out life or emotional pain its used to get rid of the awful pain Ehlers Danlos Syndrome has wreaked upon me. That is the difference between an addict and someone who uses an opiate to relieve their pain.

It has taken a very long time with me being in pain everyday before I got to the point where nothing was working and both my gp and I decided that the only option left was morphine. By the time we got there I had been experiencing daily high levels of pain for over 12 years. I had been ignored by previous doctors when I complained about pain and for a few years I had been self medicating using codeine and paracetamol (acetaminophen). I was worried that I was addicted to the codeine and would sparingly take it however a pack of 32 (which was all you were allowed to buy at one time due to the law in the UK) would barely last me a week. I was also suffering side effects from the codeine which meant I got constipated and in turn developed hemorrhoids. I know my honesty has left you blushing again.

Before getting to point where morphine was the only option left, I had tried every painkiller known to mankind, from over the counter products to prescription only medications. The only thing that took the edge off was codiene but that was losing its potency as my pain reached record levels. At this point I was still working and I had developed bursitis. Due to the pain I was in I was prescribed oramorph. For the first few days I felt horrendously sick and as if I had had a little too much to drink but the pain was gone. When I say pain I dont just mean my hip joints but also the pain in my spine and my legs. I was able to work whilst taking the oramorph, my decision making skills were not impaired and I didnt resort to shoplifting to fund my habit. 

Once the bursitis resolved the oramorph was no longer prescribed and the pain from everywhere else returned. I would like to point out that I didnt go through a detox programme to come off the oramorph, I just stopped taking it. I was lucky I had no withdrawal symptoms. So was I addicted or dependent on it or was I just seeking a pain free existence?

The morphine I am taking, in a relatively small dose no longer leaves me pain free. When I started taking it my pain levels were at a 9. I had been bed ridden through pain for around 3 weeks. The morphine worked almost instantly and my pain levels went from a 9/10 to a 2/10. I was started on the dose of 10 mg every 12 hours in 2011 and for over 2 years that worked wonders. Last year my dosage was increased to 20 mg every 12 hours. I have had to add in oramorph (liquid morphine) to deal with breakthrough pain. Regular readers will know my back causes me endless problems but I also have issues with bowel adhesions which cause me pain.

I dont just rely on morphine to ease my pain. I use distraction techniques such as watching a DVD, phoning a family member or hot water bottles applied to which ever area is hurting the most. Some days I don't use the oramorph at all. Other days I need to increase my slow release morphine by 10 mg and take oramorph every 4 hours. Most days I may need one or two doses of oramorph to deal with the breakthrough pain. I have been taking more recently due to the issues with my back.

This is still a relatively low dose of morphine, the starting dose for cancer patients is around 60 mg every 12 hours. So as you can see I am nowhere near that kind of dose. I try to keep my morphine dosage to the lowest amount possible as I plan to live a long life and I dont want to run out of pain medication options by the time I hit 50. My insistence on keeping my morphine dose low means that there are days when the pain is unbearable and I don't know what to do with myself.

My husband gets angry when I get into a situation where the pain is out of control because he knows it could take hours if not days for me to get back on top of it again. This means I am stuck in bed, electric blanket on and hot water bottles stuck to the places the heat of the blanket won't reach. Hubby says  "you have the medication there, why don't you use it?" The truth is I don't  really know why I fail to use it. I worry that my doctor will think I am abusing my prescription medications if I run out before I am due for a refill or that I will become so out of it that I will spend my life zombified. Its a really difficult balance to obtain, to reduce the pain enough to be able to carry on with daily life or not take enough and be confined to bed. 

As you can see its not an addiction but a human right to be able to live my life with as little pain as possible. When I see reports from America where certain states are making it incredibly difficult for chronic pain sufferers to obtain their medications it scares me. I have heard about the pain clinics that people have to drive hours to get to because many doctors now refuse to prescribe opiates to all but the terminally ill. The mandatory drug tests before you can have a repeat prescription. Pharmacies refusing to refill prescriptions or making the patient complete enormous amounts of paperwork before allowing them there medications. Heaven help you if you use different pharmacies to get your medications as those in charge will see that as suspicious behaviour and call your doctor who could then refuse to provide that medication in future. 

I worry that there are doctors in the UK with the same mind set. My paternal Grandmother is in her 80's and has degenerative disc disease. She receives steroid injections into her spine every 12 weeks. However its not uncommon for the injections painkilling properties to wear off well before the 12 weeks are up. When that happens she takes the synthetic opioid called Tramadol (which is used before you go onto morphine). When she has seen different doctors at her surgery they have told her they want her to stop taking the Tramadol in case she becomes addicted. In her 80's I would have thought dependence on opiates would be the last of her worries. Being as pain free as possible should be all the doctor is caring about.

Under treating pain is a massive issue throughout the world not just in the UK. Poorly controlled pain can lead to other medical issues like high blood pressure, raised cortisol levels, depression and suicide. Treating pain effectively stops all those things. When I am in pain its the only time my blood pressure is in the normal range or on occasion when in agony I have hit 130/90. Doctors tend to under treat pain for a variety of reasons, the patient isn't clear about how incapacitating the pain is and when a medication doesn't work they don't go back to their doctor (I have done this) or the Doctor doesn't believe how much pain the patient is in or the doctor doesn't believe in prescribing opiates due to fear of  the patient becoming addicted. 

Please understand me I am not saying every patient in pain requires opiates there are many other types of drugs that can be tried first before resorting to them.

When the doctors can't tell the difference between Addiction and Dependence we have a problem. Unfortunately the media likes to portray anyone who isn't terminally ill that takes morphine or any other opiate based medication as a junkie. I would like these people to live one day as we do but without the painkilling medication and see how they get on.

A weighty issue

My weight has been a major issue all my life at the age of 12 months I was placed on a diet by the health visitor because I had tripled my birth weight of 7lb 13oz. I look back at the pictures of me as a baby and I have seriously asked my mum how on earth could she take that ugly thing out in public? she laughed and said I loved you!

I know now that it wasn't hunger my little body was suffering from but an excessive thirst, even as a baby I was showing signs of dysautonomia (polydipsia) but it wasn't picked up by anyone. I was only ever tested for diabetes as a child due to my voracious thirst which of course always came back negative.

My mum and dad have often told me that I would suck on the teats of the bottles so hard that the sides of the bottle would touch and I would create such a vacuum that the teat would disappear inside the bottle, going off like a shotgun when I finished. Having spoken to my mum today she agrees with me I wasn't hungry it was my thirst I was trying to satisfy and to this day I am constantly thirsty.

During those childhood years I was taller than everyone else and heavier than everyone else. On occasions when I stopped growing I may have been considered a little pudgy around the middle but I was never fat / obese. However being so different from everyone else (leaving infant school with adult size 2 feet and being just under 5 foot at age 7) made me extremely body conscious and hyper critical of every square inch of my body. I was never whippet like, unlike the rest of the girls that I hung around with, I was normal but not rake thin.

This insecurity about my weight has followed me all through my life. I have been influenced by the media images throughout my life. As a teenager I had a subscription to Vogue magazine. I remember one article quite clearly, which followed a day in the life of the supermodel Naomi Campbell. I remember at the end of the article it said something like "oops I forgot to eat today". Forget to eat? I can tell you thats never happened in my life! How can anyone forget to eat or have so much control over what they put in their body that they don't eat? By the way Naomi wouldnt fit in a sample size these days, such is the way the fashion industry strives for thinness.

By the age of 17 I had already been to weight watchers and slimming world. I think the heaviest I had ever been when I went to these classes was the top end of 10st  / 140 lbs (perfectly fine for my height of 5ft 8in well within a normal BMI). I look back at the photos of when I was a teenager, when I considered myself obese because I wore a size 14 and think what an idiot. In those days a size 12 would have been acceptable, a size 10 would have been positively dreamy but no I wore a size 14 and in my mind I was an elephant. I think of all those wasted years when I looked stunning and healthy, spent on relentless diets to achieve thinness (perfection) and I think that is what coloured my relationship with food so badly.

By my early twenties I had developed a little known eating disorder called "binge eating". With binge eating you starve yourself for a day or two and then whilst you are starving yourself you plan what you are going to binge on with meticulous precision. Working in food retailing was a binge eaters heaven. All day surrounded by the food you were planning to binge on when you finally allowed yourself to eat. I dread to think how many calories I would consume during one of my binges.

Occasionally after a binge I would throw up, I probably made myself sick only on a handful of occasions. The problem was my gag reflex, it was pretty non- existent and sticking my fingers down my throat never produced the desired results. With hindsight I am glad that I couldn't make myself sick  because if I could of I would have then gone on to develop bulimia. Sometimes my wonky body does me a favour.

Around the same time that the binge eating was going on I developed a major depression and had what can only be described as a mini breakdown. I ended up having a lot of counselling, a community psychiatrist was involved and I also had to go to the local mental health unit once a week for almost two years. It was only at the mental health unit that I revealed the issue of binge eating. Through the support of my shrink and some hard work put in by myself with strict adherence to a cognitive behavioural therapy regime, I broke the cycle.

I am not cured of binge eating, I will never be cured as there is some place at the back of my brain where this little devil resides. In times of stress when I haven't been able to eat this little devil bides its time before striking. Unfortunately my husband is a binge eater too and has very little control over his demon. Living with me is pretty stressful. Hubby isn't a drinker (although we both smoke) his stress relief is food and the more calorific it is the better. It is hard for me when I am trying to be "good" when he brings all the "naughties" into the house. When the binging stops he always apologises for buying the food but as I always say to him, no one forces me to eat the stuff. I suppose its like two drug addicts or two alcoholics living together, its not a great environment to control that addiction.

In 2008 I was placed on steroids for my then diagnosis of myasthenia gravis. It was the worst thing that could ever happen to me. Steroids made me ravenously hungry and in 9 months I had put on 5 stone in weight (70lbs). I was the heaviest I had ever been and was wearing size 26/ 28 clothes. I truly was the monster I had perceived myself to be at age 17. I literally couldn't stop eating. I was so ashamed of the way I looked I hid away. Refusing visits from friends and declining visits from family. I have one picture of myself from that time and its my fat shaming picture, to remind me never ever to get to that size again.

I have lost all the weight I put on back in 2008, for years I was stuck at being 3 stone lighter. I was still enormous wearing a size 20/22. I felt disgusted with myself but lacked the willpower to do anything about it. I felt ugly and constantly berated myself for not looking good. All the time celebrities kept getting thinner and thinner.

Last year I lost 2 1/2 stone and was the thinnest I had been in years. I felt fabulous, I have though found it incredibly difficult to keep that weight off. Currently I am very limited as to what I can wear. My weight has been fluctuating wildly and I am fed up with not being in control. I have a wardrobe full of lovely size 16 clothes most of which don't fit. I am gutted that I have let it get this bad. I know that my crazy health situation has a massive part to play in this. Food is used in our house of a way of cheering ourselves up of dealing with stress and celebrating happy events. Our whole life revolves around food.

My health being so bad has upset me. I am not depressed its just some days it hits me really hard how bad things have become. The ultimate humiliation was having my catheter fitted by two complete strangers. I am an intensely private person and to have these people messing about with my nether regions upset me. I know it needed to be done and I was grateful as it provided some relief however when you can't control basic functions like urination it scares you. It also made me dreadfully unhappy for a time.

I now feel back in control of things although my bladder has played up (not to the extreme of the end of June), my dysautonomia has been awful during this heat and my pain levels have rocketed I am back to being happy again. Not a grinning idiot kind of happy, just the kind of happy when you can accept what's going on in your life. Even if I am carrying a few more pounds than I would like to I am back to refusing to let my weight stop me doing things like seeing old friends.

I hate the fact that so much of my life has been consumed by what I look like and how much I weigh. There is so much more to me than that. I have many regrets because there are things I have put off doing or haven't done because I didn't look good. This madness has to stop, especially when my illness is also trying to prevent me from doing things!

I  do feel dreadfully sorry for teenagers these days due to the images they are bombarded with. Due to photoshopping, airbrushing etc celebrities are held up to be the ideal, a size 8 or 10 (uk sizes) is now considered obese. You have to be a size zero or now a double zero to be considered perfection. Too much emphasis is being placed on looks instead of inner beauty. It makes me angry with myself that I allow my body image to be influenced by the fakery portrayed in magazines. I am sick for goodness sake and there are more important things in life than looking like you are dying from starvation!

However here I am again on another diet to lose the weight I have rapidly gained due to being on another few weeks of eating junk and not being able to wear the clothes I want to. There is no helping me.