The Chronic (Pain) 2015
I know very few will read this…maybe it’s because folk genuinely don’t give a shit, don’t see it or whatever. This isn’t a call for sympathy but, only a handful of people I have spoken to of late actually understand. Why so few? Because we have experienced or continue to experience what ails us at a level only we can relate.
Now, my latest ‘diagnosis’ – I use the term loosely as when it comes to IBS it’s more of an educated guess as opposed to a true diagnosis – is IBS despite my outcry at the fact that IBS sufferers tend to have a few days of severe pain before it subsides. So I am now awaiting blood test results for Coeliac (Celiac) Disease.
What is it? I found this image when trying to find an image for the thumbnail of this post – click to see the full sized image.
In a nutshell, the disease is an intolerance to gluten whereby gluten basically destroys your small intestine. It attacks the ‘villi’ (small fingerlike protrusions that line the small intestine that allow nutrients from food to be absorbed into the bloodstream). Without the ‘villi’ the body will struggle to absorb nutrients which of course renders the body weak and causes weakness in the legs etc. If the condition hasn’t reached a severe point, the ‘villi’ is able to grow back and by following a strict non-gluten diet, the sufferer will be fine. In extreme cases, the ‘villi’ is unable to grow back and may leave sufferers relying on IV drips to supply the nutrients the body is deprived of.
Imagine your disgust when you order food and discover it hasn’t been prepared the way you like despite you stating clearly how you would like it cooked/served. Imagine the sheer inconvenience of having to send it back or react in any other way than just carrying on regardless and consuming it.
Now imagine being told you may have IBS and given tips on what types of foods could cause the reaction but as every individual is different, triggers will vary. Imagine having to go on a diet where no one can really help you. You can’t just go to a class of peers, weigh in, share recipes and feel like a winner having lost weight and picked up some tasty meals to tuck into at some point. Imagine the mind numbing effort of trial and error and monitoring your intake of foods and measuring any good or bad reactions and trying to figure out what it was that contributed to that feeling (bearing in mind it can take hours and even days for some foods to cause a reaction). Then try to imagine doing this for a few weeks with NO progress. No change in pain, no benefits from doing it and when you tie that in with the fact you don’t enjoy food at the best of times and just eat to live not live to eat and you’re talking a huge mental and physical burden on top of what is clearly now a chronic illness.
You could belittle the situation by saying a large number of people suffer from IBS no matter how minor. A lot of people can continue their lives relatively normal by managing their diet and lifestyle. You could say, “I have it, what makes you so fucking special?” Nothing. I am not special. But what I do know is the pain I am in which, combined with the medication to try and combat it, renders me effectively useless. I can barely go up and downstairs without getting heart palpitations and feeling fatigued. Just yesterday, I lost control of my legs when coming down the stairs and fell. Bad enough but add in the fact I was carrying a 10 month old baby and somehow managed to turn myself so I took the full force on my back to shield her. Then combine the terror that is the fact I have fallen a few times over the past couple of months due to numbness in my legs. And this wasn’t the first time I fell/collapsed while carrying Georgia. So, not only could I kill myself or cause severe harm to my body I also have the worry of what I could end up doing to the kids when my body fails me.
Now for some reason, out of all the blood tests I have had, only last week did they decide to test for coeliac. Despite me having raised these concerns previously and the loss of feeling in your legs is a symptom of coeliac it’s only being done recently. I have said all along this has to be more than IBS – the duration that has passed where the pain hasn’t let up and the various meds that have been prescribed and making no change. The doctors scratching their heads as something should have changed considering what I have been prescribed and now we seem to be at a stalemate. A waiting game to see if Citalopram (I’ve stopped the Amitriptyline about 3 weeks ago now) kicks in and obviously what comes back in this latest blood test.
The pain and lack of activity as a result is exhausting enough but jumping through all these various hoops, doing all the leg work (ironic considering they don’t work properly, eh?) and still being made to feel belittled, pressured and hassled. I can not live a normal life right now. My days consist of lazing around reading, watching TV/movies and playing my PS4 as a means of keeping my mind somewhat active). The kids have had 3 end of terms/holidays since I have been off and the most I have been able to do with them is go for a few short walks and to the park just up the road. Hardly the type of fun they desperately need and makes me feel like the shittest dad. I know they don’t really understand and so don’t feel put out by it (they still have fun and do stuff with Lauren and her mum etc.) but the fact that I can’t be there too is a killer. When I do try, I overdo it and end up scuttling back into seclusion and so coming back out becomes more and more difficult.
I am not asking or looking for sympathy. I just want people to understand that this isn’t a cop out. This isn’t just an excuse to spend time on my PS4 or laze about or shirk my duties at home. Unless you experience this level of pain you can never understand just like I could never understand folks who go through an amputation or regular Cancer treatment and so on. I am not special. I don’t want to be treated any differently. But I just need people to understand. Think about when you have a headache that outstays its welcome. How wiped does that make you feel? Now think what it must be like to be in constant pain in your stomach region for over 3 months straight with the pain worsening as time goes on and stabbing pains every so often and being unable to really exercise or be active. Sounds like Hell, right?