I’ve just had a frank discussion with my boyfriend, he has never before tried to tell me what I should do…I know he’s right but why do I find it so hard to do the logical thing?
He and my sons have decided its time they started an ‘intervention’ . They want me to go sick from work until the worst of my flare is over, until the increased meds kick in. He says they are all worried about my state of exhaustion, at how haggard I look, and how hard I am pushing myself, that I need to rest.
I’m upset…but why? I know I’m not coping, I know I cry from tiredness on my way home from work, I know I’m not sleeping much at night because of pain and drop off during my breaks. I know I constantly check myself to make sure I’ve not made mistakes.
It makes sense I do feel shattered, but I have good days too.
I’m confused as to why I can’t stop pushing
its hard to accept that we need to take time off... I recently took a leave... sort of . I am only working one or two days a month and only 3 hours at a time and can barely move for a few days after. I know I need to take more time off but just yeaterday was talking about going back full time after the New Year, I woke up this mornig after working a whole 2 days in a row ( 3 hours each day, wow) and felt like a voodu doll.... don't know why that was in my head when I woke? so sore. and I want to go back to work?
BUT if they are seeing it, and you are feeling it, it must be time to slow down.
I know for me its that I don't want to feel helpless. I like to work, I feel needed. I know my family needs me, but at work it is different. I am afraid that when I stop working I will never be able to go back. I don't want them to think I cannot do my job, ( most all thiink I took time off to be with my youngest son....)
So good luck to you, and thanks you made me look at myself a little deeper.... scary thought!
For me, it is because I don't want to give up or give in to this disease. I don't wan't to consider myself as not being capable or not being able to cope. I feel guilty if I don't do what should be done. Letting go of what we use to be able to do is not an easy process. Sometimes we can be our own worse enemy. Fighting it can make things worse, the energy it takes and the pain it causes when our bodies are screaming out and telling us this is all too much.
Accepting this as our lot in life and making the best decisions we can to get on with it is no easy challenge. There is also a sense of loss if we do have to make adjustments and it is not uncommon to even go through grief when we loose a part of our lives we once had.
I have seen the frustration and how upset my adult son gets when he visits me. He explained it to me by saying that every time I visit, I can see that you are getting worse and by you doing more than you should you are putting more strain on your body and damaging it even more when you continue when you are obviously in pain. Pain is your warning sign to stop doing what your doing. He said I want to see you take as much care of yourself as you can so that you will be around for as long as possible in the best possible condition even with PsA. What I see you doing is wearing yourself out sooner than is necessary. So will you please let me help you and stop feeling guilty and stop worrying over whether the house is up to scratch. I want you to sit down and take it easy when I am here, let me help you out. I want to help you because I love you and give you something back in return for all the things you have done for me.
All I could think about was what a wonderful person my son has turned out to be.
Could your boyfriend and your sons be just as wonderful and caring of you?
Louise- I am sorry this is happening to you. I had to go out on disability in May of this year and it is hard. I had reduced my hours to 2 days a week for 2 years prior to that but I was still struggling more days than not. Luckily I had bought into the long term disability policy my employer offered back when my son started first grade. He entered college this year and I put the policy to good use. I think the hardest part for me was trusting my own assessment. I know I would have counseled a patient to put their own health first but found it impossible to do myself. I think by the time I made the decision all I felt was relief. The hardest part by far was the apprehension prior to going out on disability. My husband and I are naturally quite frugal but I find I do enjoy a good shopping trip these days! I remember when you posted about your lovely afternoon with your pakistani friend. I think a reduction in stress might be just what the doctor ordered. At least think about it. I know you will be able to make a decision that is right for you. I am sending you hugs and prayers and calm vibes!
It’s difficult, isn’t it? I was lucky to be retired before I got my diagnosis. Well, not really, because I struggled, really struggled with the last ten years. I retired as soon as I could, despite my DH’s advice to take sick leave to have my knee replacement done first and then retire (which would have made my pension a bit higher). But at the time, I couldn’t take the advice, just couldn’t.
In retrospect, he had a better perspective on the situation than I had: I was viewing the situation and the decision through my pain and fatigue. I just wanted out. I wish now I had taken his advice. But pain does strange things to us. You will make the decision that’s right for you, but do step back and listen to the other arguments.
Wish I could come over, make a cuppa for you (I was taught by my Brit MiL how to do make a “proper” cuppa, LOL) and give you a hug. I guess the text best thing is hanging out together on the board.
Good luck with this, my friend!
Seenie
Louise:
I too am sorry this is happening to you. I cannot relate because I am a stay at home mom, but I do know what it feels like to have people give their advice. My family saw that I was having trouble doing the everyday chores. They thought it would help to hire a “mommy helper.”. She comes in and does the laundry, light housekeeping, etc. They want me to save my energy so I can have the energy to do things with them.
I resent this lady coming in and doing things I could do or did do. I even leave the house when she is here or go into my room so I do not see her. But deep down inside I realize it is best.
I know it is hard for it makes us realize we are not as independent as we have thought. But remember, they love you and they are only trying to help.
Thank you so much for all your support, it means so much to me, I’ve cried reading through each reply.
Short term…I’m phoning work today to tell them I won’t be in this week and I have a GPs appointment for Friday to discuss things and be signed off sick
Here in the UK we self certificate ourselves off sick for the first week then have to be signed off by the GP or specialist thereafter.
I still don’t know why I push myself so hard, but I know I need to help myself thought the rest of this flare.
I can’t post more because I’m too emotional but I will let you know how I get on, x
I'm sorry you are suffering from both the physical and emotional toll this disease brings. It is a grieving process for us, I try to remind myself of the 5 emotional transition phases and except that sometimes we take 1 step forward and 2 steps back. I must say, you are truly blessed to have such a loving family to support and guide you through this. I'm actually jealous of you for that. My husband, he is a loving man, but he is clueless as to how I feel, both physically and emotionally. If I try to talk to him about it he tells me I need to stop eating Gluten and go to CrossFit with him. I sometimes wish I had someone to remind me to slow down and let them pick up where I leave off. So I say embrace that sh%t because you are super lucky to have the love and support of Family. :)
I know Michele, after being 25 years married to an abusive man, I thank my lucky stars for my lovely boyfriend, he seems to instictively know when I need him and will call out of the blue to check I’m ok (and he’s hot too! Lol) My boys keep me sane, they give me love and laughter. Thank you for your concern…I am working on an action plan for myself, the first 7 to 10 days is to do just about nothing but rest x
I know it is hard Louise. Sometimes when our loved ones are so good it is easy to feel we are not worthy. But we have to remember we are worthy even when we don't feel it! Sometimes when we feel least worthy of their love is when we are most worthy! Hugs and prayers to you.
Louise, I'm gonna be the SOB here. Not be contrarian to what has been said, BUT Kind loving caring Kids and BF etc etc CAN turn into "over protective mothers" who freak every time there kids do something dangerous like cross the street or ride a bike. Sometimes if you DON'T push yourself, you slide backwards and it becomes too hard to move FORWARD or even stay even. The Disease WINS. Good intentions aren't always good advice. Please be careful, your years with an abuser can make it easy to debilitate yourself by responding to kindness/concern to quickly. I know you have thought this out BUT.......
Thanks lamb … I will always push myself it’s just the way I am. Just sometimes I have to accept I can’t push myself when I’m on my knees ( that’s the bit I find hard), cos its also ok to cut myself some slack. Over the last 6 weeks or so I’ve not done any of my usual swimming or classes as I’ve been only able to work and do some of the household jobs because of the fatigue. I will get myself stronger and be back in the saddle …there’s life in the old girl yet! As soon as I woke up this morning I felt changed because I had made a decision to take control rather than continue in the freefall of the last few weeks. Rest and then work at rehabilitation til I’m fit to get back to the job I love …you’re not a SOB lamb, just believe in tough love with a cattle prod
Louise, a while back you were talking about how you had been redeployed to a far-away workplace, and that your employer wouldn't cut you any slack. Had you started doing that yet? If so, do you think this might have been a factor in your getting run down?
No seenie and Michael, I’ve not started the rotation yet, the new units don’t open til April next year now as its all been delayed as us ‘troublemakers’ are making sure management dots all the I’s and cross all the T’s for the sake of the patients and staff, I’m still being made to jump through hoops on that one.
This flare has been bad since the start of August, didn’t see the rheumatologist til early November. He’s increased the MTX and was surprised how my condition has been ‘underestimated’ previously. He warned me that it would be at least 8 weeks til I saw any improvement.
My diet has been good all along and I’m convinced I’ve only got this far through the flare because of the wheat free diet and lower carbs (lost 8kgs) has up to now helped the fatigue.
My aforesaid lovely boyfriend is working out a fitness programme for when I get back in the pool as he’s a registered fitness instructor, although he usually coaches children, he understands tendon, joint and ligament problems better than I do!
OK, well that tells you something about how bad your flare is right now. You’re doing the right thing. And having a resident personal trainer …
Relax and enjoy your rest!
Seenie
Thanks…I’ve pulled myself together and given myself a talking to, and with the help of you all here I’m feeling much more positive now, although I still have to talk to my manager who will, in the most caring way (?) Remind me how I’m letting all the staff down lol oh the joys of working in the caring profession
