I feel like I have a good, strong marriage and for the most part my husband has been supportive of everything I have had to go through with ME/CFS & Fibromyalgia. But even the strongest of marriages are hit at times by the effects of these illnesses and my marriage just experienced one of those hiccups over the weekend. My work schedule has been all messed up again because there is another new manager who has to get used to my crazy work routine and the few hours that I can work. It seems like once a manager finally gets it down, that one leaves and then another one comes in and I’m having to go in every week and tell them my schedule isn’t right.
The other managers knew not to schedule me 3 days in a row because it always causes a flare but I can’t seem to get the new boss to remember this. I keep talking to him about it but by the time the next schedule rolls out, my hours still aren’t right – I either have too many or 3 days in a row, or something else is wrong.
I get torn because I like working even though it is only supposed to be 2 days a week – it is the one thing in my life that makes me feel semi-normal. I don’t want to lose that. But I also understand where my husband is coming from also because he is worried about my health, which I am also, and he doesn’t want to see me end up bedridden for months.
I ended up going to work upset on Saturday and I was crying because my husband and I had been arguing before I left. I went in early to talk to my manager about my schedule and I ended up very upset my entire four-hour work shift because my husband and I had a little spat over the phone about 5 minutes before my work shift started also. I called him to tell him I had talked with the boss and they were going to work with me (hubby was also upset about me working every Sunday) and he had made the comment, “Well, I’m the one that has to live with you. When you have to work like this, you are miserable and you make us miserable.” I understand where he was coming from but it wasn’t exactly the best way to tell me something like that five minutes before I have to start working. I ended up messing up my entire shift, making stupid mistakes and I couldn’t think and I felt terrible – physically and emotionally. The only thing I could think about the entire shift was, ” I make my family miserable”.
Now all this week I’ve been having a flare with blisters on my tongue to boot so I think it is a combination of working 3 days in a row, plus the stress of dealing with my husband being upset, and trying to get my schedule straightened out – again. Stress is a big no-no for CFS & Fibromyalgia sufferers. Just a little bit of stress can push us over the edge and make a minor flare a week long affair.
I don’t want to lose the one thing I have that makes me feel normal. I know to healthy people it sounds kind of funny because they usually say that I can work for them and they will stay home for me. But when you can’t do something for a long time, you learn to appreciate the little things you can do. I always loved working, enjoyed working and felt like I was doing something important when I was working. I like having those few hours a week that I can feel that. I don’t think there is anything wrong with that. My husband needs to understand that just because I’m sick doesn’t mean that I can’t have anything else.
Sandy, I know where you’re coming from. I’ve resigned myself to working from my bed for the most part which then gives me more energy on the weekend to spend with family. Living with CFS is a continual struggle of ‘balance’. If we live with others we must learn to balance what little energy we have with their needs as well. They support us because they love us, as such we need to give them what little we can – some of our good times, not just the time when we’re crashed out. My husband struggles too and from what you’ve written I’m hearing that your husband is just asking for some time with you and is possibly jealous or resentful that you’re prepared to give to your boss, but at a cost to him – he misses out on you.
Read wrote http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf and understand that we only have so many ‘spoons’and if your boss is demanding more than what you can give then maybe you need to work out who’s more important, the boss, your job, your husband or ‘just’ your needs alone. Who are you going to give your spoons to? Who deserves them?
I know exactly where you are coming from. You mirror many of the phrases I use about my own life. ‘I don’t want to lose the one thing I have that makes me feel normal’. My quest is to be as normal as possible which is often difficult for others to understand as they see me as completely normal. Except when I am mad with tiredness. I am in a period of great adjustment which as you highlight causes stress which magnifies the symptoms. Over the last decade for the love of my parents, who are now dead, and to establish my business so I would have SOMETHING I have pushed myself to the very edge. I know this is not good and to be honest I don’t want to do it anymore. So I am working on getting a life with happiness & fulfilment within the bounds of what I can do. Spending more & better time with my beloved husband is one of my key aims. It’s hard isn’t it. I so admire your efforts. Our school hymn was Fight the Good Fight With All Your Might. I have lived by it since I sang it as a child when I first became ill. I was fifty this year and I’ve changed it a little: Fight the Good Fight With All Your Might but Pain Free. Let’s hope we both get to do it. All my best wishes Gillian
I totally understand. I was forced to stop working because of my illness. I m here waiting on the government here to decide on if they want to give me a disability check while my husband thinks I m keeping secrets before we got married about my illness. He wants for me 2 get a parttime job but my flare ups are horrible. The ever menopausal weather here is killing me. I was so happy for a gud week last week n was very thankful.
Now I m going thru flare ups n the sleepless nites, tiredness, fibro fog, spacing out without knowing it n jumping in conversations I tryin 2 play catch up and so much more. Tired of meds, tired of blood work, tired of testing, tired of doctors who laugh after everything they say, who blame my shoes which is flat for my palm n sole of my feet getting swollen n in able to walk, keep my wedding ring on. I just want my life back n please don’t mention exercise or walks cause that’s just a reciepe for more flare up. I just want 2 be treat normal n not look like I m crazy or trying to get high or addicted to meds. I want to play around with my kids. They r to young where my flare ups prevent me from staying at the play park long enough because I m wearing 3 layers of clothes when its in the 50’s r 60’s. Help him practice 4 soccer, be ok to drive long distances without me worrying about a black out or my feet falling asleep.
HELP me please.
Just wanted to say I feel ur pain.