We just returned from a last-minute visit to my hometown of Rochester, NY, to spend some time with my dad. He was recently diagnosed with stage 3 melanoma on his scalp. It has moved into the lymph nodes on one side of his neck but doesn't seem to have spread from there yet. It has been a shock for all of us, as he has been very healthy and doing well previously. He's going to have surgery next week - possibly multiple surgeries, depending on what they find when they get in there.
So, we drove the 8 hours each way to visit and spend some time with him. Soon, we will leave again on a long-planned trip to Oklahoma to visit my father-in-law, whom we are working on moving out here by the end of the summer. We will help him get some things done for the move and also visit with family coming up from Texas to see us while we're there. It's probably our last trip out there, so it's a big deal for all of us - our sons have grown up visiting there twice a year!
When we get back, we will probably make another trip up to Rochester, after my dad's surgery.
So, yeah, things have been pretty crazy here lately, and it's not going to get any better for a while! This week, I am focused on getting unpacked from one trip and ready for another, so I probably won't have much time for writing again. Physically, I am managing OK. I was exhausted this weekend because I don;t sleep well in hotels but am better now that I am back home.
I just wanted you to know I haven't forgotten about the blog - just distracted lately. I do have some posts in mind, when I can find time.
I saw this picture & saying on my aunt's fridge this weekend when we were visiting. She is the caretaker for my uncle who has some severe medical problems that cause issues similar to dementia, so she gets what this life is like. I am trying to remember this...hope you like it, too!
Hi Sue,
ReplyDeleteI'm so happy to have found your blog.
I’d describe myself as a ‘mild’ CFS sufferer, in that I am able to work and sometimes socialise and exercise a bit. My condition is very up and down. However a couple of stressful things in my life have made me depressed and worsened my condition a lot. As you say in a lot of your posts it’s a vicious circle.
Here in the UK I would say we are blessed to have the National Health Service. I’ve relied on it many times in the past. However with these sorts of misunderstood conditions it can be easy for them to just give you basic advice and not much else, they are pretty stretched so I understand.
Many of the treatments and suggestions you write about never even crossed my mind. As a small example when I went to a CFS support group a couple years back we were told that supplements such as B12 work for some people, but not for long and that they didn’t really know why. Well you’ve clearly explained that it is probably down to people’s ability to process B12 and that that should be investigated further. I’m going to get many things tested and make some lifestyle changes, largely based on the advice from your blog, it’s got to be a worth a shot right? And thanks so much for taking the time to write all you have.
I saw your most recent post, sorry about the health problems your father and uncle have. I wish the very best for them.
On a lighter note I really enjoy that you get to have movie nights. Two of my favourite hobbies are videogames and movies. When depressed it is easy to overlook and forget ‘joy’. That is watching a really good movie with a friend for example. I’m looking forward to seeing some very good friends this summer; we’ll do many things including movies.
Finally, your blog very nearly encouraged me to write my own. I’m not going to because I really should be focusing on recovery (both physical and emotional) but I know the best thing I can do is point people in the direction of your blog whenever I think it will help. In fact I already have shown it to three people I know who have/had CFS. One was housebound and now runs a cake shop, one was bedbound and now goes running and does his studies and one whose condition is similar to mine and I hope she goes from strength to strength.
So to sum up, thank you so much. If you would like any updates on my progress please let me know and I’d be happy to post again. :)
Wow, thanks for all the kind words about my blog! I really appreciate that and am so glad it has been helpful to you.
DeleteI totally agree with you - I'm sure the NHS is good for many people, but it's pretty useless for ME/CFS - they still ascribe to the GET and CBT "treatment" and rarely recommend any actual medical treatments. It's a shame since there are so many treatments available that can help!
I am glad to hear you are looking into some of them.
Enjoy your summer, your time with your friends, and some good movies!
Sue