Spiralling Down Again

@Lyra

Thanks, it helps to hear from you.

Since I'm not out very much, most of my support comes from husband. Practically he helps a fair bit. He has trouble understanding all the different forms of fatigue and exhaustion and right now I think he's feeling fed up, especially as there was no clear trigger. I also know that he gets upset when he's doing the IV for me and it doesn't work.

I do have other friends and family who are understanding and it's great not to have that added stress if I cancel or keep turning down invitations, but it's rare to get extra support when I'm feeling poorly at home.

My symptoms have changed over time, but I think I've been affected my whole life. As a baby I would just scream and had significant GI distress, it's hard to know what the real cause was. There are other things like that my whole life - temper tantrums, migraines, IBS, urinary tract issues, allergies that seemed to cause long term effects.

I certainly do have other problems, but after having surgery on my kidneys as an example, how much of the pain was normal, and how much of it was due to the surgery triggering swelling? Illnesses, allergic reactions, etc. can also be triggers so I do think some symptoms were caused by something else to start but then my HAE kicked in.

I have one clear example when I was young that was for sure HAE. I had a mosquito bite on my face and my whole face ended up swollen. I was a toddler at the time. I assumed I was pretty allergic to them most of my life due to the large welts, as they were still in the bad but not out their range, but the first summer of being on the HAE medication I only had tiny little bumps from them.

The throat issue has always been there I think. I used to get lots of sore throats, would often wake up with them and they would go away after a while. They just weren't so bad and often would be short term. As I've gotten older, they have gotten worse. I also used to have energy, and would get exhaustion that would last a day or a few days at the most.

It wasn't until 2011/2012 when things got chronically bad. Rather than just week long stretches things were lasting months. It wasn't constant, but the good periods did not last anywhere near as long as the bad, and I think feeling 'better' was just relative.

If you meant as of this recent bad stretch I think it started Tuesday. I did quite a bit for me that day so it wasn't unusual to start to notice my body was worn out. Wednesday physically, I couldn't do much which I was prepared for. Yesterday I felt worse which is what is tipping me off that this isn't just a matter of needing to rest after doing some things. Today, I was sleeping on and off until 3pm.