So how am I doing? Honestly? I would say there are the good and bad periods of this disease to me. Eg:
1) there have been days whereby when my flare is real bad, when my ulcers hurts real bad and plagued with painful abscesses. Those are the days when I am unable to eat any solids without tearing up, when I feel unpretty due to the abscesses on body + facial acne, when psychologically I wonder why all these are happening to me. These are the days that I would end up crying to my husband and feel kind of defeated. These are the days whereby I would not have any appetite to eat and only drink liquids such as soy milk, Ribena and of course water to 'survive'. Let's not forget the fatigue that comes along that is akin to having flu, that no matter how much I want to rest yet can't seem to sleep properly.
2) Then there are days, like now, I am coping fine. Not that I am really ulcer free or skin lesion free, just that they don't bother me that badly. In fact, since the day of diagnosis, I have forgotten how it feels to not have a single ulcer in my mouth or on my tongue. I don't remember what it feels like to have a normal sensation when eating or drinking. I have also forgotten what or how chew my food properly before swallowing, as I would chew my food a bit then swallow it as soon as possible to avoid much pain to discomfort from food being in my mouth too long. Stronger tasting food, like spicy or salty food tends to invoke a higher pain level when eating but that doesn't stop me from eating them though. Just that I avoid them when the ulcers get too many or big.
My daily tablets including my Colchicine three times a day, probiotic once a day and multi-vit Gummies once a day. If my flare is bad, then painkillers are taken to help me sleep and oral gargle to numb my mouth before I brush teeth.
All and in all, I am still very much trying to catch the flare cycles and learning how to deal with this disease. It is going to be a lifelong thing that I have cope with. I have to keep an open-mind that it may bring along other issues in future. Just like any other Autoimmune disease, there isn't any cure. Medications are just for symptomatic relief and helps to control the number of times of flare.
But one important lesson this disease has taught me would be to put myself first rather to force myself to do stuff that I feel unwilling. I have learnt to rest when tired, to reject things that makes me uncomfortable and to listen to my body cues. I have learnt to prioritise myself first, no more do I fight fatigue to head out to meet people or force myself to go all out at work when I feel unwell. So those who know that I am down with this autoimmune problem have to understand and those who don't, I also am not much bothered to explain myself to them.
Finally, I am grateful that my husband has been quite on the ball with me throughout this journey so far. Although he doesn't fully understand what I go through, but he is empathetic enough to respect my decisions to not eat out, when I want to sleep early, not in the mood to cook or eat anything solid and when I have my breakdowns due to the discomforts. The above mentioned are good enough for me coming from him...
