OK, I've been here 10 minutes and been flagged up on my spelling and grammar more than 913 times already! ((( Come on!!! )))
A lot of life has happened since I blogged here regularly. If I'm honest i'm not to all convinced why I feel the urge to return to blog again. I have a lazy mind and writing random thoughts while getting flagged up for spelling mistakes is kinda off putting, but i'm still here so I guess something needs to escape the darkness! Maybe it's nothing, maybe it's everything.
Iv'e reached a point in life where people are seeing the real me now. When I first met my husband being who he is and what he does meant (felt like) I had to conform to a certain standard. I was required to be someone else. I guess after 22yrs, I've either become that person through the years or I've just slowly returned to me. I don't know?
My life was stopped in it's tracks this year when I was diagnosed with Ankylosing Spondalytis and Costochrondritis and immediately prescribed Biologics Medication to slow down the progression of my spine fusing. I have to Inject myself every 4 weeks to suppress my immune system and take a heap of medication to manage the pain. That whole saga took it out of me, the diagnoses, tests, scans, the uncertainty and the worry were debilitating. I was left with a nurse who held a fake self-injecting contraption trying to convince me to stick this thing 'My real injection' into my stomach! It was only when I saw the blood drain from my husbands face that I thought I'd better get on with it or else i'll be picking his arse up off the floor! Do you know the film " The Rock" with Sean Connery and Nicholas cage, the scene where he has to inject himself in the heart with the antidote before the CX Poison gas vaporizes him, well that's what was going through my head when I had to take the first Injection.
It actually didn't hurt a bit, so, God forbid, don't be afraid if you ever have to do anything like this, there's nothing to it!
It took me a long time to come to terms with the fact that my life would never be the same again. I spent months trying to figure out the perfect combination of foods to eat that would not upset my immune system that might trigger a pain flare. Maybe I could find the right exercise to keep supple to prevent flares. Nothing worked. But bottom line, I had to find the right Pain Management. I have a new way of life, I walk with a walking stick now, (which still shocks a lot of people) I'm drugged up to my eyeballs and don't eat like I used to.
My Grandson was sick last night and I couldn't be with him, he had to go into hospital and the worry....!!!! I was seething with hate for this disease, i'm not used to being away from my sick babies, i'm used to diving right in and getting puked on, coughed on and what not; but now I can't. I can't go near no one who's sick! I've been on Anti-biotics 3 times in the past 6 weeks, my body is nuked - exhausted.
I've lost nearly 2 stone in weight on the A.S disease diet, not a bad thing, I've enjoyed rummaging through my clothes to see what clothes fit now. :D
I'm not depressed, although it feels like it, but i'm not. I feel like I'm coming out of a dark place into a New Light. I've accepted my days now. Each one will be and are different from the next. For example, just the other day I woke up with a professor Klump hand! You know that scene on the nutty professor, where his hands swell up before he returns to his usual self? Well, I woke up with a 'Klump' hand! I though it was hilarious - i laughed so hard. Woke DH and said look at this * There I was waving my Klump hand around in bed*. I said this disease is lost, is it supposed to be here ?? Short answer 'Yes'. It F****s everything up! My hand returned to it's usual shape after a few minutes followed by so much pain. But that's ok, I have an arsenal of well kept secrets to use on myself to manage pain, as long as I don't drive the car that day. :P then all's good.
So what you see now is the new me, a me where I never thought I'd have no control over! It changes your thought process. I feel like i've been completely re-wired. Sometimes I find myself not caring what troubles people have and don't give a hoot what they think because my own issues are so overwhelming and they find out the hard way that it's a 'Shut the f*** up and leave me alone day today' followed by a 'I'm OK now' day. Yes, I have to figure that out in an acceptable way. My husband gets it, he knows by how my face puffs up and how awful I feel.
Yes, I absolutely hate not having control of this disease. It's ok to hate, you don't go to hell for hating. But I don't like hate and i'm sure in time it'll turn into an understanding. I'm not there yet!!
Looking over the past 10 months I can say that I've been on an emotional roller coaster, I'm not the first and won't be the last no doubt - I know, but it is very real. Trying to hold it all together during a freaking pandemic has been quite the test of strength.
My mind is bittersweet...I spend the days wondering "what will next week hold in store for me, next month, next year... What's going to be like? Will there be more pain. While all the time trying to stick my day to day stuff - work etc.
The things that go through your head...!!!
I was going to write nothing matters to me no more, but i'd be wrong. I'll change my train of thought to 'Nothing matters at the moment! Although I don't know how long that will last....
I have a happy soul. I believe 'Laughter is the best Medcine'...
I just need to dig it out once again.