But things have changed and I'm not sure how exactly. All I know is that I'm no longer getting the urge to write it down. My "go to" form of therapy is no longer working and that saddens me because for two and a half years this blog has been my salvation. But of late, writing and even talking about our health issues has become tiresome. And I suppose it's because there is always something wrong and because I'm tired of people only associating this family with poor health. We are so much more than this illness.
The other issue which constantly troubles me is my inability to write things down exactly as they happen. You can't bitch or moan about medical personnel for fear of litigation. You can't rant or rave about services provided for fear of it getting back. And...you can't tell a story as it exactly happened for fear of being labelled as negative or being told to be positive.
So, my question is what's the point? Why not just keep a diary and write down WITH A PEN the whole truth and nothing but the truth. Bitch and moan to the pages in private. No litigation because no one will see anything, and the " positive thinkers" might go curl up and die somewhere, when they have nothing to feed off.
The reason I continue is because " it is what it is". Even if sometimes I can't write the whole story, it still paints a vivid picture of what life with a rare disease is like. And in my small way I see that as educating the masses, or at least those who read my blog. Maybe it might lead to patience, tolerance, understanding. Who knows?
Living with a rare disease is rough. Last week I accompanied my daughter to a check up. The results were great. The doctor even said some magical words which made me cry, " we are winning". Today a week later she had an incident which resulted in a short hospital stay and her father and I driving like mad to be with her. This is how it is with a chronic condition - one step forward, two steps back.
February 29 is Rare Diseases Day world wide.
As Rare Diseases Day once more approaches, I want to take my hat off to the following people who make coping with my rare condition a bit easier. This list is in no way conclusive.
- A spouse who holds my head above water.
- A daughter who hugs.
- The support crew ( like my sister) who drop everything to help.
- The doctors who ring you with results because they know you're anxious.
- Nursing staff who always have a kind word and time to talk.
- Pathology staff who insert canulas first time.
- MRI staff who always have a blanket ready.
- A patient GP who always does his or her best to learn more about your condition.
- Kitchen staff who sneak you another biscuit.
- Receptionists with a friendly tone to their voice
- Employers who understand and send flowers.
- A mother who makes soup and other food because if you eat you'll get better
Till next time...xxx
ST
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