I understand how this family of support group is so helpful. I feel bad when I have a flare & just wing it when I know I have great friends. To help me through.I here for you.
Hi Lisa!
I'm so glad that you finally posted, it's good to hear from you. Thank you for sharing with us!
Chronic illness is so very difficult to deal with for everyone, especially those who are losing their givers and care-givers. It's especially tough for those who are not used to having to give back to the ones who gave to them for so long. They mourn the old you as much as you do, all in their own way.
The scientists and Pharmaceutical companies have given us many life saving or life enhancing medicines, however I feel that their TV commercials are misleading in what they project. I take Enbrel for Psoriatic Arthritis, and though it is helping me, it will never restore the joint damage caused by the disease, or reverse the spinal stenosis. I will never be well enough to play golf at the masters tournament with Phil!
I hope that you are under the care of a good General Practioner as well as under the watchful eye of a good Rheumatologist. I feel they are our best hope for some quality of life. Please make sure you find a way to get to them. Good care is so very important!
Please know that you have a huge, understanding family here. I am glad that you turned to us. We are here for you!
Sending love and hugs,
SK
I have been fortunate that my husband and oldest daughter have been understanding and helpful. My younger daughter took a long time to come around. She didn't like that I was sick so she lived in denial for a while. I remember my older daughter and husband coming home one day and finding me crying because I was so hungry and my younger daughter who was home wouldn't bring me something to eat when I just couldn't get up. She has since come around. I also put on the face but my older daughter seems most able to pick up when it's the face and I'm really not ok. I try to hide pain from my husband because I know it makes him feel bad that there's nothing he can do. There's nothing he can do but help me be comfortable and he already does that him seeing the pain sometimes is not good for him. I am lucky that my family helps me continue our good work for others so I have not lost that piece of myself. Extended family is another matter. While my side of the family live a close they know my struggles and even some of my pain triggers (music and whistling and certain sounds frequently trigger pain for me). My husband's brothers on the other hand forget to the point that when they see me in pain, they are surprised when my response is usually that I'm used to it or it will pass. For the most part they really don't get that I am sick because I don't look sick. I use facebook a lot to stay connected with them but of course don't really talk about the pain there as who wants to see that. Very rarely do I mention it and when I do it's usually to praise my kids for really taking such good care of me.
None of this of course is of any help to you other than to say that you are not alone in having people who just don't understand. Hopefully, like my younger daughter, your family members will come to understand what you need from them. I saw that you are preparing a letter and I think that's a great idea. I hope you will be clear about what you do or don't need from them and that they come away with an understanding of what you are feeling.
First, I am so glad you wrote here. You are in the company of friends who live fibro and understand. You now have support that you have been going without.
Support in the home does not always come. My husband works two jobs, does the finances/groceries/cooking because I can no longer focus. I burned water! Truth! He does the shopping because when it comes time to cook dinner, I have fallen asleep He figures he might as well buy food he chooses to cook for dinner. I see him about 10 hours a week, total, and most of the time he is home he is playing computer games while the TV is on full blast. (ouch!)
I have been a homemaker for 30 years, unable to work because I had to homeschool two multi-need kids, and when they got old enough to function in my absence, I was very ill from toxic exposure to formaldehyde. I probably had fibro before, but it was diagnosed around the same time as the formaldehyde incident that left me chemically sensitive. I was super-mom.
I have taken of the mask. I have 18 chronic illnesses, and although I live victoriously, I now let people see what I need to do. Having a rheumatologist helps with credibility. I also use a walker, cane, or wheelchair depending on how I feel when I do go out. No more mask. If they don't like it, they don't have to look!
I have also looked to how I can do the basics with minimum effort. I also pace them. If I do too much one day, then the next day I totally rest.
Let's keep in touch - don't stop posting. We are here for you!
Am sending you a double batch of love hugs!