Frustrated…


It has been a few days since my last blogging frenzy, many apologies.

I have alluded in previous posts to the fact that I have been, and sadly continue to be, poorly. I have had yet another hospital appointment today only for a registrar to ask me my case history again and then tell me to come back in three months. It’s the same questions every appointment “So how did this start?” “How does it manifest itself?” “Are you allergic to anything?” “What happens if you take that?” They are sending me for yet more tests.

They have a few ideas but nothing firm yet as they think whatever it is may still be in its early stages. Well, if that’s the case I don’t want to go through it fully developing but it seems like the doctors’ hands are tied until something definite happens. Blood tests aren’t coming back normal but scans are. I have plenty of unpleasant symptoms but no diagnosis, I would be frustrated if I had the energy.

I feel like life is passing me by. I sleep anywhere between 12-18 hours a day and no matter how good the quality of the sleep, I wake up feeling exhausted. I have tried reducing sleep (just in case the old wives’ tale is true about too much sleeping making you tired) and nothing works. I won’t bore you with my other symptoms but, trust me, they’re not great.

My mum is convinced it is Lupus. Has anyone out there been diagnosed with Lupus?

Does anyone out there ever smell something that isn’t there? For example a freshly baked cake.

Every appointment I attend, I go with the stupid hope that this person is going to be the one with something concrete to tell me, and then tell me how they’re going to make me better. And every time I come home, I feel a crushing disappointment. How much longer can I go on like this?

Vic x

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