As Mummy’s disease progresses, we are starting to see more and more symptoms and new things that she’s doing. Almost every few days now, something new comes up, in addition to everything else that she had. This makes things slightly more difficult to manage.
This week showed us a few more symptoms than we would like to see. For one, she can’t swallow medicine quite as easily any more. Even if we cut the pill in half, it doesn’t work. She can’t swallow Tylenol anymore. Tylenol! Of all things. She just took Tylenol like a few days ago. As of yesterday, she couldn’t swallow it.
Another thing that has changed this week is her mobility. She needs someone holding her while she walks, and little things she used to be able to do before are slowly becoming harder to do. Standing straight by herself without any support from anything or anyone is one of them.
We have now decided that she can’t walk unassisted and she needs a walker. Walking from her bed to her bathroom is slightly difficult for her now. She is just constantly wobbling and unstable, and her legs shake trying to support her weight. She’s not a heavy person or overweight by any means, her knees are just extremely weak.
Papa says she has developed arthritis in her knees and joints. This adds additional challenges. Things like taking her to the bathroom, giving her a shower, changing her clothes, getting her in the car, are slowly and steadily becoming harder to do.
We can’t give her arthritis medicine because she can’t swallow it. If she doesn’t swallow it, her joints will hurt. If her joints hurt, we have to give her medicine. Catch 22.
This week hasn’t been that great in terms of Mummy’s health and progress. Her depression is slowly creeping back, she is complaining of aches and pains again, and she rarely is smiling or laughing now. Her irritability is there in small doses, and her OCD is in full swing again.
Not sure what’s going on, maybe the medicine has no effect on her anymore. A talk with her Dr. is due. We hope she doesn’t go back to how she was at her worst, crying all day, too depressed to eat or do anything, angry all the time. HOPEFULLY this is just a small phase, it’ll pass.
Anis told me a few days ago that our outlook on this is “too positive”. Maybe we are being too positive about this whole situation. But, honestly, I’d rather be optimistic about this disease than be pessimistic about it. Maybe our optimism is our way of dealing with this and it’s our coping mechanism.
Realistically, we probably are setting ourselves up for disappointment every time she takes a step or two back. But, for the sake of our sanity, if we’re not positive about this, it’ll swallow us both into deep depression and sadness.
Realistically, she probably won’t get better. Realistically, she will probably get way worse than we think she is now. Realistically, actions like eating and swallowing food won’t be intuitive anymore, we will probably have to explain to her how to swallow and how to chew. But if we constantly think about that, how emotionally unstable would we become?
This disease doesn’t have a happy ending. Its ending is depressing, sad, and negative. If we constantly think about how much worse this is going to get, our already high stress level would shoot through the roof. I don’t think that’s a good way of dealing with this at all. We need to stay positive so that she stays positive. We need to stay positive so that Papa stays positive. If we’re not the solid rocks, they won’t be able to depend on us. If we’re not stable and strong, how can we expect them to be?
I don’t think there is any other way to deal with this disease than be positive. I’m not saying we’re not being realistic. We are fully aware of how bad this disease can progress, and we are fully aware that there is a high probability that Mummy’s disease WILL reach that level.
But somewhere in there, there’s a small probability that we will manage this disease well, and it won’t progress further. If thinking about that slim, small, minuscule possibility is what gets us through this, then I don’t see a problem with that.
Our faith teaches us to be positive, in ALL situations. Positivity breeds positivity. And that’s the best we can do.