Evening OstoBuddies, or should that be good morning?
It’s currently 28 minutes past midnight and I’ve been in bed for almost 3 hours, yet I can’t get to sleep for love nor money.
This morning I awoke from a much-needed, restorative, 9-hour sleep, but it didn’t feel anywhere near lenghty enough. Unless under circumstances of extreme ill-health and exhaustion, I refuse to let myself nap or sleep during the day amid fears it will simply fuel those insomniatic flames at bedtime. Instead, I have spent the day moping around the house, eating everything in sight, and just generally being Queen Bitch to anyone that dared to cross my path. And today, my husband got a full dose of Queen Bitch. Those of you unfortunate enough to have been prescribed Presnisolone (and other corticosteroids), will no doubt, completely relate to the anguish it can inflict on both body and mind. Don’t get me wrong, it’s not all doom and gloom in those little 5mg tablets; the past 11 years that I’ve been taking them (on and off) they’ve got me through some pretty severe bouts of Ill health.
At the moment, I’m on a relatively low (10mg daily) “dampening” dose; despite having my end ileostomy formed in February (2014) I still have my anus, rectum and large bowel in-tact. Albeit, heavily disease with crohns. I was severely underweight at the time of going ‘under the knife’ and because of the lung disease I have, it wasn’t in my best interests to go through something so major. Anyway, back to the steroids; the reason Im still taking them long-term is because I also have severe oral-facial crohns. One half of my gastroenterology team believes it’s still occurring because of the active disease remaining at my bottom end. The other half aren’t so sure, and so the decision to have further surgery (anus, rectum and colon removal) is temporarily on hold. I have met with my surgeon recently and the colon coming out, sooner rather than later, is a dead cert; however, being relatively youthful, he has reservations about removing my anus and rectum unless he could guarantee that it would cure the oralfacial side of things.
Although at 10mg it’s only a mild dose, it reeks havoc when it comes to bedding down for the night. It’s a bit of a vicious circle; one night I’ll drop off within 10 minutes and get a straight 9 hours sleep which is just heaven, but the next 3 nights I just cant seem to drop-off until around 2am. Having only 4 hours sleep a night for 3 nights straight really takes its toll on me; insomnia is, without a doubt, in 1st place for the worst side effects of prednisolone. In 2nd place we have ‘mood swings’; the worlds either coming to an end and Queen Bitch making an appearance, or you’re as happy as a kid on Christmas morning – there is no ‘inbetween’. And inevitably, the complete lack of sleep heightens those emotions. 3rd place would be awarded to ‘Moon Face’ along with ‘Increased Appetite’ in 4th; thankfully the latter two have only made minimal appearances lately.
Despite these Prednisolone Blues, it’s still a better quality of life than living without them. Stupidly, earlier this year I decided to take a break from them and within a week my entire mouth and throat started to flare. I was in so much pain and discomfort that it hurt to talk, drinking water felt like I had a mouth full of glass shards. I struggled on for two weeks, the agony increasing as the days went on. I lost 8lb’s in a very short space of time, dropping back to 6st 12lb. I became extremely weak and dehydrated through lack of intake and so was admitted back to hospital on Easter Monday. A week of strong IV steroids and antibiotics, things rapidly improved and I was dischaged and have continued on oral prednisolone ever since. These photographs were taken earlier this year; you can clearly see the agonising, itchy inflammation on my face. The oral side of things don’t appear to be particularly problematic, but you can only really see the tip of the iceberg, so-to-speak, as the problem is deeper set in to the gums.
So, for now, I’m plodding along with the ups & downs, highs & lows, and countless sleepless nights. Maybe some of you are, or have been, in this situation that can offer me advice or suggestions to aid a better nights sleep. You can contact me anytime, night or day, via email at firstname.lastname@example.org – I would love to hear from you; in the meantime I’m off to count some sheep! Until Next time OstoBuddies….xxx