I’m sorry, I have been MIA lately. Truth? The last few months have really taken their toll – liver problems, kidney problems, staph infections, bizarre skin rashes, eyes sight problems (the very real possibility that I could go blind), tapering prednisone yet again and of course the unrelenting, severe pain in every joint.
I know you all understand…but depression got the better of me for a while. I have missed you all – and posting here is something I should not have stopped doing. Writing soothes my soul and helps me deal with all of the above. I guess I was loathe to write about depression…but now I realise its kinda dishonest to skip that part of this delightful disease. Like hiding part of me. As if I am ashamed.
Well, I am not ashamed. Depression is no more anything to be ashamed of than having Rheumatoid Arthritis itself. But it’s not easy to express yourself when your brain is confused and you’ve lost your way. I will write more about it, because I believe it’s an important part of my story, and it’s time I had the guts to tackle it. But briefly, what have I been doing to get back on top of things?
I have been spending more time with my psychologist and I have adjusted my medications. Tapering prednisone causes mood problems for me. And methotrexate causes severe depression. The kind that creeps up on you…slowly, insidiously. And one day you realise that you are not yourself at all, that you are having crazy thoughts and you are no longer driving the bus.
I stopped all my medications for a few weeks, except prednisone. Physically it was fairly horrendous. The pain was as you would expect. Which didn’t help my mood. But I was depressed because of pain and disability…a very different thing.
Medication induced depression feels different to me. And I recognise it now, having been down that road a few times already, if not always which medication is causing it. It takes trial and error. But the main culprit is methotrexate and now, for real this time, I will never take that drug again. I stopped it three weeks ago, and now I am getting back to ‘myself’. I am feeling more normal, more in control of my disease, in fact I’m feeling downright defiant!
Much more like me J
I have even booked an impulsive and rather irresponsible holiday with my kids. Just me, and the kids. I live in Canberra. We are flying to Brisbane (2 hour flight) then I am picking up a car and driving a further hour north to the Sunshine Coast. It will be much warmer there than here. There will be a beach. And there will be a pool with a huge spa. All I need to do is get through that flight, and car trip.
I admit I am nervous. I have never done this without the support of an able bodied adult. Someone to take the wheel if I have a full body mega flare. I am anxious…and last night I felt absolute panic about whether I can, in fact, physically do this. What if I DO have a full body mega flare? Several of my joints ‘flare’ every day. I am always in pain somewhere…but which individual joints are flaring makes a radical difference to my capabilities. I can adapt, find a way. If ALL my joints are flaring (hands, elbows, shoulders, hips, spine, neck, knees, ankles, ribs, jaw) I can’t ‘save’ one joint by putting more pressure on a ‘good’ joint. I can’t do much of anything at all.
Since I have tapered below 12mg of prednisone, I have been needing to take round the clock slow release oxycodone (Targin) and short release oxycodone (endone) for break-through pain. There is always break-through pain. I am at 9mgs of prednisone now, and I need to taper off. Slowly. There is no choice. Prednisone has caused cataracts and glaucoma and I don’t want to go blind. So the only option is stronger-than-morphine opioid medications.
I can’t take these drugs when I need to drive a car for 100kms on unfamiliar roads.
I can take all of them as soon as I get there.
So I need to have a mild to moderate day on the two days that we are travelling to and from. I am trusting the gods to sort out this out for me, because I am an optimist by nature. And if the gods let me down, I am trusting myself to figure something out, because I am capable, and resourceful and I fervently believe there is always a way.
And I plan to document it. Show the world all the things that need to be taken account for a person with a chronic illness, for just for a few days away. Like making sure there is a microwave for heat packs. That there is a fridge for Enbrel. That the beds are comfortable…no camping or two star ‘roughing it’ for me. The 7 or 8 daily medications, plus the 2 or 3 others incase of incidentals, like nausea or severe indigestion caused by meds, or the eyedrops that I need to take daily to protect my vision. All the little ‘extras’ things I need to pack…incase.
The sheer courage that it takes to leave the comforts of home where you are ‘safe’ and take a chance because sometimes the soul needs to travel, to find warmth, to find sun. To try to give my kids something a little more normal. To give them some good memories. To give ourselves a challenge and prove we can do it, even if it’s not the way we used to do it.
Wish me luck. Pain free is too much to hope for…but pain control is possible 🙂 I wish the same to all of you!