Haven't written in this for a while.
Day 23
Pep talks depend on what's going on. Some common issues
Needing lots of rest - I AM doing lots, even if outwardly it doesn't appear like it. So much is going on within my body.
Feeling sad/frustrated overall. This is hard and it's expected to feel that way at times but there are better days ahead.
Injections - I can do it.
Day 12 What's it like?
Its like having flu. Every day.
Hello there!
I kind of missed day 21 so I'm going to post 21-22
day 21.
I visited lots of websites available about bone cancer. After a while I quit the research. At the moment I have alarms set on google about phantom limb syndrome.
day 22.
I'm not from the US so my experience is completely different. Lucky I had great docs and my illness was before the country hit the recession.
Day 13 Mental health
I've suffered with depression on and off all my life. I've no idea whether its related to my physical problems, but they certainly don't make me happy!
My anxiety and panic attacks are definitely related to higher pain days. I've only recently made this connection, now I use pain relief more mindfully to calm me down.
Day 24
My social life has really changed, depending on how I'm doing. At it's worst, my social life becomes about my family and people I connect with online, both who I knew in real life and those I only know virtually.
There are some health care professionals I really like and 'socialize' with them during appointments. In particular there's one nurse I enjoy talking too, it's unfortunate her speciality doesn't match my condition within the rare blood disorder clinic but I still run into her a fair bit when I'm there. My massage therapist has become a friend.
Currently, my social life isn't too bad. I'm generally able to get out even if it wears me out and I have to limit the number of times/week. The thing I find the hardest though is being home during the day. Not very many others are free! I would like to start going to exercise classes a few times a week when my health allows it though. Also with the nice weather, even taking a book to a park often allows for some small talk. Running errands is a good way to have minor interactions with people too.
Day 23...
My pep talks are pretty simple. I normally have 2 kinds, one when I repeat myself that everything is going to pass and remind myself I just need to hold on... And the other one is when I go f*** everything what's the worst thing that can happen?
It works for me *shrugs*
Day 14 I am grateful for
The NHS
My hearing aids
Finally having a diagnosis and treatment
My partner's endless support
Our wonderful daughter
Day 25
Actitivities I pursue:
- Gardening
- Involvement with forums
- Walks on good days
- Yoga
- Reading
This one is hard, as I was born with this condition, so it's hard to say what I would have done differently if I was completely well. All I can do is compare better periods in my life to the flare ups. Some are a bit more obvious.
- I came here because of being ill.
- I know how to do IVs one handed because I am ill.
- A fair bit of reading on HAE, and I hope to become involved with educating people more somehow.
- Pilates, I probably would have enjoyed it anyways but I sought it out specifically because of particular symptoms and at the time I probably would have used the cheaper university group classes instead if I was well.
--Joining and going out with meetup groups.
Day 24!
Ive been blessed with pretty good friends that understand thats nothing personal when I disappear for a while, both in real life and in virtual life.
Day 15 What would you say to someone newly diagnosed?
Diagnosis opens the way to treatment for JHS. Find a good physio who understands and commit to actually doing the exercises. Its slow, but life changing. And pace yourself, you can't do it all at once.
For hearing loss I would say, "Hearing aids only help if you wear them!". Its hard at first, but the more you wear them the faster your brain will learn to use them. And you do have to learn to use them. Its nothing like putting on a pair of glasses. Give it time.
Hearing aids won't help you in every situation. Learn to lipread, you probably do this to some extent already, so start watching faces to help you to hear.