Having a chronic illness is exhausting.
No, I don’t just mean the symptoms, of which there are many; the limitless fatigue, the joint aches, the seemingly endless pain and nausea amongst other decidedly less enjoyable ones.
I'm thinking more right now of the intense schedule of appointments, and various sessions of poking and prodding to varying degrees we have to endure.
On top of my full time job I often feel I have another profession trying to keep on top of my jam-packed social diary (by ‘social’ I obviously mean MEDICAL DIARY). There is something wholly depressing about having to make room in your diary for FUN. Let me tell you, it’s pretty dismal having to plan your social invites around medical appointments. These treatment sessions, check-ups, procedures, injections and blood tests, ETC, all must take precedence over partaking in an actual social life. It’s difficult enough holding down a job, keeping a home and managing all the normal responsibilities of day to day life, without having to factor in this constant stream of medical happenings. If I could afford it, I’d hire a P.A solely for the purpose of picking up my prescriptions, handing in samples, arranging my hospital appointments with various consultants, nurses and doctors and reminding me to take my various medications on the clock all day every day. It’s a job my iPhone is already fit to bursting with and one too depressing to buy a Filofax for (plus it’s not 1983 when Filofaxes were actually a ‘thing’).
It seems a trivial factor of living with Crohn’s Disease, and to a certain extent it is. However it’s another aspect of the illness that makes it inescapable even when you are well.
Constantly attending hospitals and keeping track of what should happen to your arms and/or backside and when, means there really is no ‘break’ from chronic illness. There’s so much planning involved that it’s almost constantly in the back of your mind, (even when it’s not in the forefront of your pain receptors).
I feel pretty disheartened when those weeks arise where I have more medical appointments in my diary then plans with the people I love. I hate having to cancel or rearrange occasions due to illness, or because I’ve been trumped by another hospital letter hitting the mat. I understand of course that keeping on top of my appointments is vital, but that doesn’t make it any less infuriating. Nor does it help my cause to be ‘more’ than my disease. It’s a continual reminder for me and my friends that there is no escaping this.
Not to sound melodramatic, (although I’m well aware I do); but when my illness takes over my having-good-times party-on-excellent, is when it really gets me down.
I try now to get proactive about my medical-schedule and make it less of a chore – I leave myself reminders and set myself alarms so it all becomes more of a routine than a burden. I’ve fallen into more of a trap lately of allowing my disease to take priority over the rest of my life. Not something I’ve done knowingly, however since I’ve noticed it happen I’m trying little by little to change it.
A wee bit at a time, to fit in my ‘sick-life’, around my real life.
Not the other way round. The way it should be. You WAIT until I am ready to see you DISEASE.
Hopefully, like an unwanted admirer it will eventually take the hint and move on. That’s the DREAM anyway. Leaving me, free as a bird to step up my Jon Hamm stalking regime.