Posted 9/8/2010 6:29 PM (GMT 0)
Nanners: Why I made that post? That was my first post, I never actually intended to talk about my healing/recovery cos I know how that story sounds.
I came on looking for advice for if it is at all possible to tell people whats going on, people that know you and are close to you, and have them take you at your word, since almost everything about these diseases is invisible.
I work in my families business atm, have done for about 5 years now since I had to downgrade jobs and take on something much less demanding that would be flexible with my condition. In those 5 years they saw me miss months of work at a time as I routinely had bad spells lasting months that left me bedridden.
So to fast forward to the start of this year, they saw me at work for Jan and Feb, then come March, I did my BB and started missing work again. I was off work from March to the start of May, during that time I wasnt sure of what was happening myself. During May I started be able to do a couple hours a day and pushed myself back to work. It was during May that I started to see the pattern of symptom heal, remission-symptom flare then heal, another remission-symptom flare then heal. Some were worse than others, but since May I only ever missed a day or two of work here and there. By June I was sure of what was happening and start to talk to my family about it, and their reactions were denial, that what I was saying couldnt be true. What they had seen in the last few months just looked the same to them as all the years previously.
So my problem was how to talk to them and have them take my word that I was telling the truth about what I was feeling in my body.
From June onwards I would start to increase my hours at work and tentatively broach the subject with them to test the waters and they still werent taking my word for it. By late August my body started to show things in my skin, for the last 10 years or so I was very very white (my background is mediterranean European) and over the last few weeks my skin at first was flushed pink in colour and has now progressed to a golden brown. Combined with seeing me eat all the foods they had known I had avoided for 10 years now my family has come around and do believe me, though they are still unsure about the gone for good part. They still worry about it coming back.
The skin thing has brought a lot of comments from people lately. Where I live we have just entered Spring and its still quite wintry atm. For my skin to change like this during the dead of winter, while Ive been spending 90% of my time indoors has people completely startled, the people that have been watching me these last 6 months that is. Those who havent seen me in months have been asking me where Ive been to for a holiday and when I say nowhere, well I groan cos then it leads to talking about everything Ive talked about here.
I posted on the RA forum last week because I was hurting (nothing disease related), I hadnt seen my best mate in over 6 months (he works a lot interstate and overseas) and he called me from Broome where he was currently working to catch up. I thought great, I have some awesome news for you and went dadadada. My best mate who had seen me bedridden and seen what Ive been through since the age of 13, the guy who pulled me off the road when I was unconscious from a car knocking me off my motorbike so the cars coming up wouldnt run me over, basically a guy who had seen me go through a lot of hard times said "Mike, I think youre an idiot, and your crazy. I think you need to seriously go see a psychiatrist" and then hung up.
Last week my head was going crazy, why do I have to do cartwheels and jump through hoops for anyone to believe me? My family came round sure, thanks to seeing some visual evidence, the increased movement apparently didnt cut it though. I cant get this guy to catch up to even let him see me and Im not even sure when hes in town anymore because he wont answer my calls. So lacking visual proof, how do I get him to take me at my word? Thats the zone I was in when I posted that post to the RA forum Nanners. This guys my best friend, was? my best friend, I dont know if its moved to past tense yet. I still havent been able to talk to him and its still something Im struggling with.
Now thats a little personal to share but put yourself in my shoes, I wanted that advice without getting into the full story because I imagined telling the full story would make any thing I wrote be ignored. Seriously I do know how all of this sounds. It just sort of escalated into telling all. I blame JayBespoke for responding and showing interest the way he did :)
Looking back on all this forum stuff, its become very clear to me how disorganized my mind has been. Keep in mind I have a lot to come to terms with here myself, and sorting it all out in my mind looks like its still a work in progress :p