So, it’s been a couple of months since my last blog post.
I’d use the excuse of “I was busy”, but I guess if I listed the things I’ve done or have achieved in the last couple of months, a normal person wouldn’t class that as “busy”…
And herein lies the problem; I’m not a normal person – never have been, never will be!
I never have been: This is due to the rebellious/individual nature in me; I’ve always deliberately gone against the grain and done my own thing, being my own person.
I never will be: This is partly due to my rebellious/individual nature still existing (that’s not going anywhere), but also due to the fact that for the rest of my life (however long or short that may be) I’ll be burdened with at least one on-going health condition, and it’s just that, my health, which I’ve decided to write about today.
This is the very subject I’ve been putting off writing about since I started this blog, but I realise that in order for people to “follow” this blog and understand me and my ways, they first need to understand what constitutes “me” in the physiological sense.
So here goes, my rundown of the majority of my health conditions – some of which can be, and will be fixed, cleared or improved upon, but sadly some won’t be or can’t be:
1. At the top of the list, it’s Crohn’s Disease.
So what exactly IS Crohn’s Disease?
Good question. The short answer is, nobody knows for sure. It’s very hard to define, and in my personal experience, it’s very hard to diagnose with 100% confidence. The best way I can describe it is it’s a “bug” that sets up camp in that area of the body everybody just loves to talk about; the bowel!
Yep, I said the B word! It’s a sensitive subject, and not one people usually discuss out in the open, but I find that if you use self-deprecating humour, it’s fairly acceptable… Crohn’s is basically defined as “inflammation of the bowel”, hence the term “Inflammatory Bowel Disease” for the family of illnesses it belongs to, along with Ulcerative Colitis.
If left untreated, Crohn’s can essentially kill you, and if not managed correctly, or when it “flares up” it can be utterly debilitating at its’ most extreme. Thankfully, my Crohn’s is being treated, and so long as it remains in “remission” it isn’t necessarily a threat to my life.
What do I mean when I talk about “flare ups”?
Flare ups are essentially like flu season; a flare up comes around every so often ans usually knocks the sufferer for 6 (That’s a cricket reference, I believe!). Flare ups can be major or minor, but each one brings with it a set of challenges that must be overcome.
What do I mean when I talk about “remission”?
In a sentence, Crohn’s can be a bit like Cancer in that it never completely goes away. Remission in terms of Crohn’s is the same as anywhere else – it ain’t attacking, and that’s a good thing!
So what exactly happens with Crohn’s?
Well, it varies from sufferer to sufferer, and this is why it’s so hard to diagnose and define. For me, when it flares up, it basically creates a blockage in my lower bowel which makes it incredibly hard to digest food properly and stops things flowing properly, sending various things in various directions, and the result is a pregnant-looking stomach and potentially a lot of mess, exhaustion and dehydration plus a few other minor symptoms.
See how I avoided a crude description? Count yourselves lucky I didn’t go down that route!
Crohn’s can often leave the sufferer in desperate search of a toilet/bathroom with little notice that there’s an issue. This is, for me, because I fear public embarrassment since most of the time, it’s vomiting that’s a problem for me. (Not the other thing you’re thinking – though that is a problem too, just less of a problem!)
This is why I lack the social life everyone else enjoys. A lot of the time I have zero confidence that I’ll make it through a nice evening out without souring the night with bad public experiences. Best not to put everyone else through that, right? Best to stay at home, alone, forever and never go out and see people, right? – Yeah… I’m working on that one!
Why is it called a disease and why does it sound like it’s contagious?
Don’t worry! It’s not contagious! You can’t “catch it” like some other “diseases”. It’s a common misconception with the term “disease” that it’s something that is viral. Crohn’s isn’t viral and although it’s not clear what the cause is, there is evidence to suggest a genetic link so if you’ve got Crohn’s, it literally may be down to that bad pair of Wrangler jeans your mum or dad passed down to you! (That’s a play on words, for anyone not smart enough to work that out!)
I could go on and on and on about Crohn’s but I think nearly 700 words on the subject is enough – You can always ask me any questions you have about it; I don’t mind answering! All I’ll say to lead me on to the next topic, is that Crohn’s (and often some treatments) can have a profound effect on other processes in the body, thus causing some side-effects which lead to further issues!
2. Next up, Scheuermann’s Disease.
It’s safe to say, for as long as I can remember, I’ve never been “tall”, and for anyone who’s known me long enough, I’ve never had great “posture”…
That big long S word that’s very difficult to spell! Scheuermann’s Disease!
What is it?
It’s basically a deformation of the spine, usually resulting in an un-natural curve. Remember the Neanderthals and Hominids? Remember how they had arched backs? Scheuermann’s can pretty much send you a bit like that – or worse!
For me, I have an unusual “S-bend” shaped spine, and this is partially down to genetics, as members of my family have either had Scheuermann’s or have had similar spinal issues, but it’s also partially down to being a side-effect of Crohn’s. – Or so I’m lead to believe!
There’s nothing much I can tell you about Scheuermann’s Disease… Again, it’s not contagious. It makes your back hurt like hell pretty much all the time. It curves your spine and makes you look like a “slouch” all the time. It makes it incredibly uncomfortable to sit or stand and very difficult to sit correctly in any chair, and there’s not a whole lot you can do about it other than a lot of physiotherapy exercises and get as much calcium absorbed as you can!
3. Next, we have another back problem! Ladies and Gentlemen, My name is Sean White and as I type this, I am 24 years old (plus 363 days) and I have the bones of a 60+ year old! That’s right, I have Osteoporosis!
4 years ago, I was apparently diagnosed with Osteoporosis, but honestly I have no recollection of anybody using that term when talking to me about my back issues and my bones. I thought we were still talking about my Scheuermann’s Disease and completely missed the part where this was something different and fairly serious! Why nobody thought to correct me or monitor this is beyond me!
(Although it may have something to do with the fact that I fell out with the consultant I was appointed after the second session with him! …. He wasn’t a people person and I didn’t take kindly to that when I was very angry at the world!)
For those who aren’t aware, Osteoporosis is the thinning of the bones in the body (not just the back, though this is usually where the body is most affected) and it usually occurs in (get this!) people over the age of 60, usually 70+ and more often in women, plus it can occur in post-menopausal women.
…It’s only just being discovered that hey! Young people can get it too! What a wonderful world we live in, indeed! (Bit bitter, perhaps, Sean?)
Well, just a few months ago it’s been brought to my attention that my Osteoporosis has gotten worse and I’ve now slipped into the “severe” category (Again, usually associated with older people). It’s due to low calcium absorption - notice I’ve already referenced this - and low physical exercise - notice I referenced exhaustion too…
Are we beginning to see a pattern here?
Yep, it’s that mischievous Crohn’s Disease up to no-good again!
I have until my “late 20′s or the age of 30″ to correct the Osteoporosis issue and get my bones strengthened as much as possible because usually by the time you’re 30 (and these are my new consultant’s words, not mine) your bones are set for life, and just slowly deteriorate from then onwards. This deterioration is accelerated if you suffer from Osteoporosis, which as a young person, could have drastic consequences.
So, basically, unless I’m treated with a drug that increases the risk of developing cancer (something one of my Crohn’s drugs does too!) and absorb much more calcium and exercise as if I were training for the ‘lympics, by the time I’m 40 or 50, I could be in a state where the slightest knock could fracture my bones and they may or may not repair… Wonderful situation to be in!
(Is this turning into a rant? Sorry!)
4. You knew this was coming… Calcium Deficiency!
What a surprise! I’m low in calcium!
Due to…(Yep, you guessed it!) Crohn’s Disease, I can’t absorb calcium properly, despite however much calium I try to shovel down my gullet on a daily basis! The solution? 3 monthly injections of Ergocalciferol (Calcium/Vitamin D)…
Is it enough?
We’re not quite sure yet! It remains to be seen, but I’ve been on the treatment for nearly 2 years now, and I’ve only just been told my Osteoporosis is worse… So, either the injections are preventing “further damage” or they’re not helping… It really depends on when the damage happened, and since we can’t go back in time to find out, it’s a case of waiting and seeing what happens over the next couple of years (great!), by which time, it could end up being too late to do anything about it!
5. As if that wasn’t enough, Vitamin B12 Deficiency!
You know most cereals contain vitamins and minerals which include B12? Yep, despite a love of cereals, I STILL can’t absorb B12 properly! (Who created this body? I think I need a refund or a replacement!)…
As above, the treatment was a 3 monthly injection of B12. (oh yes, 2 jabs at the same time! – not to mention that every 3 months I get my blood tested to monitor one of the drugs I’m on, so 2 needles putting in and one needle pulling out!) But this has recently been bumped up to 2 monthly after we’ve figured out that a lack of B12 is what’s causing what I refer to as my “crashing” in the second month, where I become very tired, with little energy and end up sleeping a lot more! It remains to be seen if bi-monthly B12 injections make a difference! Here’s hoping!
Ready to slit your wrists? (Don’t, by the way!) Well, imagine how I feel when it hits me in waves just how bad my health is! These are only the “top five” issues I have. The others don’t need me to delve into detail about them, but perhaps not surprisingly, one of the major players in the rest of the list is behavioural issues (slowly being treated by Cognitive Behavioural Therapy or CBT).
As a result of the health conditions I have, I’ve gradually developed several fear-induced behaviours which are (in an ironic sense) adversely affecting my lifestyle and quality of life. One of these includes a mild case of Mysophobia (often called Germaphobia) due to a fear of my low level of immunity/lack of a functioning immune system.
Another is slight Obsessive Compulsive tendencies (NOT OCD, by the way!) just a few compulsions which stem from not being able to control the outcomes of some scenarios in my life – possibly as a result of my appendix bursting a few years ago which left me on the brink of death which I could do nothing about! (That’s another story for another time, and no, I’m not over-exaggerating! You’d be shocked and appalled!)
So hopefully after 2000+ words of a snapshot into the daily health struggle that is my life, you can understand why I had to leave my job as an Audio Engineer for a top UK games company back in 2006 when this all really started to kick off for me and why I’ve not been able to “work” since…
I am slowly making my way back into “work”, but that’s for another blog post at another time!
Through all the negativity and the depressing nature of this post, there is a positive to be taken away from this…
I’m still here!
I’m still alive. I’m still fighting. I’m still breathing. And as long as I’m still breathing, I will continue to fight to stay alive, because I deserve to be alive.
I may get/seem lazy, I may get complacent, and I may not have the perfect road to recovery… I may not get the storybook ending to this struggle, but you know what? I’m gonna give it a good go, and if it kills me? At least I can say I tried!
That is why I’m writing this blog.
This is my life. This is my life in words. This is my struggle and I’ll be damned if I can’t get through this alive.
Yes, you can look at my life from the outside and see that I’m in a terrible place. I’m financially poor, I have no job, I’ve just moved out of my apartment to go live back with my parents, I’m a drain on the economy because I receive benefits, and I’m a drain on the NHS because I have so many health issues. I have no girlfriend/fiancée/wife. I have no kids. I haven’t achieved any of my “major” life goals as yet.
But you know what? That’s all about to change! Despite the fact that it’s chuffing hard to be me, and I double-dare anybody to try my life on for a day and see how they feel (not that I’m the only one in the world going through something like this or anything, it’s just some people really don’t get it and words just sometimes aren’t enough).
At least I appreciate the life I have and at least I’m trying to live as best I can. Some people get so bogged down over the tiniest of things that they just “stop living”, and then we all wonder why there’s so many “benefit cheats” out there who do nothing to “get a job” and “stop mooching off the taxpayers”. I bet there’s people out there who think I’m “one of them”. I think we all need to just stop and think about things for a second and think about why they’re in the position where they need to claim benefits in the first place? Something must have happened to make them jobless or homeless or housebound or whatever…
Granted, some people do treat benefits as a right and not a privilege, and deliberately live off them, and quite frankly, I probably know a few of them too, but the vast majority of people who are on benefits have had something happen to them that’s put them in that position, and more often than not, if you open your eyes and look hard enough, you’ll find that people are trying to work their way back up and get back on their feet so that they no longer need to claim benefits. That’s why the benefits system was created in the first place – so that people who’ve been dealt a bad hand by life have a fighting chance of survival!
And survival is what I’m aiming for! I know my issues aren’t all going to magically go away, but there’s definitely things I can do about them to make my life a little bit better while I go down this road.
It’s gonna be hell, but if I can make it to 80+ years old and still have a reasonable quality of life, I’ll be able to look back and say “You know what? It was worth the fight!”
Life is worth the fight. Life is worth living. I will, one day, return to “living” rather than “just being”.