I have just finished reading Parting the Fog: The Personal Side of Fibromyalgia/Chronic Fatigue Syndrome by Sue Jones and there was a part in the book that really struck a chord with me. It is the chapter where Sue talks about those who have stood by you throughout your chronic illness journey. I think this really struck a nerve with me because I have been so sick and I can really see the affects it is having on my husband and son over the past week.
If I’m not at work, I am on the couch or in bed – sleeping or wishing I were sleeping. Between my sinus infection, which hasn’t improved any, my bladder, and my CFS & Fibro flare, I feel as though my world has come crashing down around me yet once again. I’ve been barely able to make it through my work shifts, if I do at all, and when I get home, I am on the couch, a lump -worthless – trying to recover. Saturday was the absolute worst day and I had such a bad sinus headache that I could barely even chew any food. It was that bad. I got home around 2:45 p.m. and I slept on and off from sometime after 3 p.m. until 9:30 a.m. the next morning. So my family has been missing me and I feel guilty because I haven’t been able to be there for them, but I haven’t been able to be there for myself either.
I’m at this point where I feel stuck. When my husband was still working, if I would have a flare or would get as sick as I have been, I wouldn’t think twice about calling off work. But now that we have lost his income and we have extra expenses with insurances and other obligations, I don’t feel like I have that option anymore. My disability is not that much each month and if I don’t work, we won’t have enough to cover our bills – especially now with him not working. So the stress of feeling stuck is adding to all of this illness, I’m sure.
Anyway, when I read Sue Jones’ book, and was reading this paragraph and letter, I thought how profound this paragraph was and how many of us can relate. We have to also remember to try and empathize with our family and friends when we are down and out as well and how these illnesses affect their lives. Below the paragraph Sue wrote is a letter she also wrote that you can copy, re-write or make fit to your own circumstance. It is a great idea to let those we love know that we are not only thinking of what we are going through during these hard times but we are also thinking about what it is doing to them.
Who has stood by you? It may or may not be family. Family has more of a moral obligation to an ill member, but some will abandon that obligation. Maybe there is someone else who has suffered the ripple effect of your FMS (Sue combines Fibro/CFS into one in her book and refers to it as FMS), yet continues to be there for you. Please don’t get so caught up in your illness that you fail to recognize their needs. If they have made a significant contribution to your life, be sure they know how much they are appreciated. Being close to someone with FMS is not an easy row to hoe. Show them the following letter, or make up one to give them.
Dear Ones,
You have been put in the position of dealing with an illness that isn’t even your own. I’m sorry this burden has been placed on you. I never wanted it to be this way, yet this is our reality. You have handled it better than I ever could have expected or imagined.
Thank you for allowing me your strength to be my strength, when I had none of my own. Everyone needs someone to stay by their side, no matter what. You have done that for me. Don’t ever think I take your presence for granted. Although I should tell you more often, I am eternally grateful for all you mean to my life.
I am very aware that it hasn’t been easy for you to accept or cope with my FMS. I know you don’t fully understand this illness, but then neither do I. It would have been so much easier for you to walk away from this hardship. Choosing to stay has proven your strength of character. You passed up the selfish choice out of love and commitment. For that you have earned my deepest admiration and devotion.
You have given me so much, while I feel I’ve been able to give you so little. I appreciate your generosity of spirit, which does not ask for an equal return. Maybe someday I’ll be able to repay you in kind.
Thank you for believing me when I tell you I’m not feeling well, although I may look just fine. My credibility has taken a beating and it means so much that you not only believe me, but also believe in me.
You keep a glimmer of light shining, even in my darkest times. I don’t know how I could have endured this trial without your presence in my life. My heart rests assured that you won’t abandon me, no matter how rough it may get. I feel this assurance because it has been rough, and still you have stayed.
May God richly bless you for your strength, dedication and love.
With heartfelt gratitude,
I think with awareness day coming up in May, it would be a great time for everyone to send this letter or one like it to someone who has stood by you throughout your illness.
If you would like to purchase Sue Jones’ book, please click on the link below!
Parting the Fog: The Personal Side of Fibromyalgia/Chronic Fatigue Syndrome by Sue Jones
I think sending that letter out is a lovely idea! 🙂 I’ve saved a copy and need to think it over but I think I’ll send it.
I do have some people who have stuck by me. Primarily that is my best friend, who’s been my carer for something like 7 years now, I think, since I became housebound. (I’m now bedbound) She’s been absolutely amazing. I actually don’t think she ever really doubted that I was genuinely ill – though that might have a lot to do with the fact that she’s the one who see’s me at my worst, for hours a day. I absolutely couldn’t deal with this illness without her!
My parents have been relatively supportive too. They’ve tried hard to hear what I’m saying and accept it as truth … they don’t really quite understand, I think … but they love me and accept that I’m genuinely sick. I usually see them for a few mins each day.
Other friends are completely off my radar now. I have some family, my brother & sister in law, with their little baby boy, my nephew, who I see just a few times a year – but they’re busy first-time parents, so I can’t fairly expect more.
It’s all rather complicated really, isnt it?