It started with, “I’m worried about tomorrow”, not a great opener, but it led to my pouring out my torn and shredded heart. It was 8 pm, time for my meds and I had just joined Adam in the kitchen. We hadn’t spoken in detail since the Social worker, Karen, (yes, I at last. have her name) had left on Friday. It had become a closed book, other than the odd words over how I had gotten the time wrong and so on. I was doing my usual, putting on a brave face and telling myself that I could manage this. After all, it’s just someone here to help me in the shower. The fact that it’s now just 4:30 am on Wednesday morning, should tell you that I am coping at all.
As is often the way, with the first word out, the rest just kept coming and coming. There was a stilted conversation while I tried to use my nebulizer, but as soon as it was done, then the truth started to flow. I have never given anyone even the slightest speck of control, since, I walked away from my first marriage. Something Adam was aware of from day one when it took over his life as well as mine. Like it or not, he was going to have a job, eat proper meals and be part of my world. I didn’t mean any harm by it, and he somehow knew that even before I told him about my lifetime of abuse, from childhood to meeting him. But when the floodgates were open, there was no closing them.
Today isn’t just about getting help, it is about asking for it, about the beginning of giving away that last independence that I have, and that is so huge, it is suffocating me. I apologised for not letting him help me, I went through all the reasons, all the things that I have justified in my head about why I couldn’t do so, even though I knew all of it is stupid, I still can’t do it. I told him in ways I don’t think I have ever told him before of the pain that I feel, not physically, but mentally because of this stupid illness that is killing me, as there is nothing that I or anyone can do about it. Between him handing me more and more tissues, I admitted just how scared I am about losing even the slightest bit of control I have left. As I blubbed and he held me, I suddenly realised that the look on his face was reading in not the way I expected, there was something there, that made me stop for a moment. “I’m not giving up, I am not going to let this beat me”. He took a deep breath, “I’m glad that you said that, as I was beginning to think this was the start of the long goodbye”. He could read my pain, but had lost my determination to go on.
For me, this handing over control is like stepping back, into a time that I fought so hard to escape. He tried so hard to tell me that I am still in control, that they are here to help me, not control me, but it doesn’t feel that way. We both realise now that we chose the wrong day, again because I am led by what other say. Either Adam should have been off for this first visit, or we should have arranged it for the Sunday. Having him here, even in a different room might just have made it that bit easier. He is the only person who I trust to take care of me, to guide me and to think for me. As my brain gets more and more muddled, I need his to keep me on the right track, to fill in the bits that I miss, or don’t understand. I know that I ask a lot of him, but he keeps telling me that he wouldn’t have it any other way. He fell in love with me and chose to take the vows that he is more than happy to live with, in sickness and in health. We have just been unlucky that it isn’t the latter.
In the grander scheme it is a tiny thing, but last night I asked him how many more mornings I had to take the Steroids. His answer was just one more, so I double checked with him that he meant that yesterday morning was the last, or was there another. Either I miss read his words, or him mine, but either way, the results was wrong, I have another dose this morning. As I said small, but those sort of confused screw my head big time. Just like the mistakes during the Friday assessment, if the detail is wrong, I will fret unknowingly, somewhere in the back of my mind, desperately trying to make sense out of something that doesn’t add up, but I don’t know why. We spoke for nearly an hour, going over feeling and the help that I need from him to survive what is, after all, a totally new phase of life for me. He now understands that I need him to be accurate, to not miss what I don’t see. To guide me even more than he has done up to date, plus to double check that I really do understand, that I’m not just brushing it aside or not hearing his, or others words.
Right now, and not just because of the time, I should be resting, I am in the midst of a flare, dealing with a body that is making all of this harder than it would have been just a month ago. I should be resting, letting my body have the best possible chance of healing, but instead, I am stressed to a level I haven’t felt in years. I can’t do the slightest thing about it, other than to go with the flow, to do what I have to and to survive it all, as I have done up to date. I know one thing for a fact, today isn’t the day, that I started that “long goodbye”, one day I will, but I am still a long way from it, especially, if I can get my head around accepting the help that I so desperately need, and Adam can’t give me, not because of him, but because of me, which kind of makes the whole thing harder, as it is myself, that is letting me down.
Please read my blog from 2 years ago today – 09/06/2014 – Muscles, what muscles
Two Rooms Plus Utilities 
You are strong and you are brave. Living with chronic illness is hard. We hold onto any and every small thing that we can…”I can still do this or that.” When we can no longer do this or that…well…it’s difficult…to say the very least. I hope that things go well for you.
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Independence when it is stripped from you bit by bit is hard. Of all the things to lose, this is without a doubt the hardest. It is a fact that I am holding onto, that so far, I have always adapted and I will to this as well.
Thank you for your support, it all helps. (((Hugs)))
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As I said to you months ago, I am the same about what I will let my husband do for me. Nothing with me exposed, things have changed to much.Partly from age, mostly from health. And yes I have gone from an 8 to an 18 too. And it sucks !! It all just sucks. (what happened to all those miles I walked and all the aerobic classes I taught etc.???)
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I never taught fitness, but even with kids I refused to have a car, we simply walked. I brought up two children who still walk for miles and don’t bat an eyelid at healthy living, it’s there life as it was mine. It seems so unfair that we do all the right things and this is where we landed up.
Take care and stay strong (((Hugs)))
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Hi, I feel it is a privilege to read your words. This is such a private thing and yet we are reading your plight. Thank you. I have Fibromyalgia and have similar experiences. One thing I have learnt is that I had to give myself permission to accept my vulnerability. That doesn’t come easily. We are designed to self-protect. I had to allow myself to trust my Partner to be the part of me, the protector, that I sometimes cannot be. Adam is willing and able to make you whole, it seems, but yielding control over onesself to illness is never going to feel right, so remind yourself that giving up some, not all, control to Adam is safe. He loves you, from all you describe. Allow yourself to believe and accept you will not be rejected, let down or left alone. If you can let him be that for you, you can then be freed up to focus on self-care while he handles the parts you find difficult. I find you to be incredibly brave and that is inspiring. Take time to reflect over your strengths, for they are many and step gently away from focusing on your weaknesses. You are safe.
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Part of the point of my writing, is for days like this. These are the days when we are lost and alone, no matter who is there around us, that need to be shared. If one person reads this at their time of crisis, it was worth writing and more than worth the pain in doing so. Our lives are hard, I can’t make mine the way I want it, but I hope I can show, it is the way it is.
As for yielding control to Adam, I am still learning that one, but it is more than that. I feel I have put so much on him already, and he doesn’t need any more pressure from me, no matter how willing he is. He still deserves a life out side of me. This week though, has shown me that I have to, no matter how much I have tried not to burden him.
Right now, life is tough, but we will get there, as we have come so far already. Life is a constant learning curve and not always a good one.
Thank you for caring enough to give me your support, even my strength fail me at time.
Take care (((Hugs)))
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Comment by: Stephen Walker
Hi Pam,
Help is at hand, well I’m at the other side of the country but I would help if I could.
Accepting help is not an admission of defeat. You have come through a LOT to get this far and that took strength and determination.
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Sometimes, it doesn’t matter how strong we are, or how much we know, logic escapes us, especially when we are tired and our health is low. I know I will get through it, but it is making myself believe that I will, that is escaping me..
Thank you for your support, it all makes a difference, no matter how far or near we are from each other (((Hugs)))
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Hi Pam, I don t know how you ve managed this blog all these years but certainly you don t miss any feelings out…Genius, amongst a time like this. As you may know I m in middle of process of assessment that needs ratification at moment so hopefully it passes as I verbalised tearfully everything, well most, thought after I should have said this etc.
Today our social worker has been again and done an assessment totally not what I thought at all ..so I got mixed up, I can do a lot of important things, I m ok but just ok…repeating what you have written:) – ” go with the flow ” is what I need to do and I now let the experts get it right, so far I have good faith so feel we ve been lucky. Today as prompted by nurse and sw I sorted my mess out and saw GP ( who was new at surgery and I am too) who whipped through everything and said I could do telephone appointments :).
I really, really hope your help having a shower has gone well and you have had a sensitive carer you could click with and maybe a chuckle in between and it has not been one of them horrifying moments that put you off forever, I imagine it might have been difficult too but you don’t know until you try. I ve had a few showers each carer has gone around it in my personal way and there little individual way that is human to us all I think. Each time they blow dried my hair too as I agreed but never expected it and I loved it, I felt fresher than ever. This system was on an ‘as and when’ called a Carers assessment with domicillary work involved too depending what’s needed. I m at a stage where I need routine due to me declining in all ways one knocks on to the other. But all comes fast and sometimes to a scary degree even though it is nothing new to them assessing / carers, it is to you. I really, really hope a lot of sensitivity comes your way to meet your needs and as for missing things etc maybe you ll fill gap between you and Adam in which ever which way. I wonder how many people are in our position housebound. Full credit to you both because maybe it’s a new Hello. Cheers if I was in a pub with you 😉 or dancing at the records you played whilst DJ ing, on your achievement so far! may your outcome eventually be a big step forward.
Sending gentle hugs.
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I doubt there is a single one of us who would find all this ease, but we have no choice, and that is the real bummer. Life has brought us this far, and I suppose that we have to let life take us the rest of the way.
The carer, she was really very nice and yes, I had those moments where I was more than a little uncomfortable, but I am still here, just as you will be once yours has started. It’s been a long road, from DJ to sitting here typing, but that road hasn’t ended, not until I say it has.
Take care (((Hugs)))
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Jane ,I am not Pam but I know she appreciates your words, I think it is wonderful that everyone in health crisis has someone to talk ,cry, and rant to. I know I sure appreciate everyone of you that write your stories. I am sick, but right now I am having a reprise as I call it. I have just come out of a long terrible flare of fms/mecfs and feel like I have had a temporary prison leave. But I know it will come back. We still have plenty of pain and fatigue even when we have a rest from a flare. I just had shingles pop up again ,but I can handle those as lonlng as everything else is quiet. I hope you are doing as well as possible, and I wish.if we all felt well I could be there with you two in that bar and laughing and havng fun.😌
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Ok, I’m going to start by saying you shouldn’t read this if it’s going to offend you. Then I’m going to say it.
You’re being very brave to admit that you are feeling extremely anxious about your lack of control, and about your unwillingness to give up control. Honesty is critical in dealing with illness issues and in retaining autonomy as your ability to do things independently wanes.
I’m going to suggest that you talk to your doctor about anti-anxiety medication – a very small dosage – as the benefit that you may achieve is a calming of the hampster-wheel spinning in the back of your brain as you obsess over your lapses in memory and judgement, and that obsession becomes self-defeating.
I say this because I suffered from ADHD as a child (attention deficit hyperactive disorder) and the ritilin they prescribed for me helped to calm the hampster-wheel of anxiety so that I could be calm and get on with life without beating myself up mentally.
I spent the first 5 years of my life in and out of the hospital having multiple surgeries, which caused me to have gaps in my socialization, education leaps beyond my years (anything to keep me quiet and calm), and a crushing anxiety about way too many people having way too much to say about my life, my pain, my recovery, etc. I didn’t fit in with the kids, and I didn’t fit in with the adults, and I was miserable.
The kindest thing my Mom said when I was about 8 was this, “There are somethings you can and cannot control. The genetic stubbornness that you inherited from both sides of the family is both handicap and a blessing. How you use that stubbornness is critical to your own well-being. Learning to be kind to yourself is crucial for your overall survival. Pick your battles and accept that there are somethings that you cannot control. Until you reach that point, you’re on the medicine (ritilin) because the rest of us are exhausted watching you struggle and fail to control your own subconscious. We can’t help you any more than we have, so we are recommending that you try this pill and see how you feel after a couple of weeks. If there is no change, if you still feel anxious, we’ll try something else. For now, please do it for me and for you.”
I’m not sure if Adam would agree or not, but he can’t be with you 24×7, and something like ritilin may work to address the hampster-wheel of reality plus anxiety that you are dealing with as your world is getting smaller.
Butting out again.
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If, I wasn’t in the midst of a flare, I would agree with you 100%, because of it, I will bring that down to 80%. I have been thinking about calling the doctor. I can’t be sure if anxiety is spinning my health, or my health is spinning anxiety. I feel so ill just now that I honestly don’t know what is what, and I accept that. I do feel a hell of a lot better than I did a week ago, but I still feel so ill that I don’t want to do anything. I feel like I am in the middle of a tornado and it’s ripping my life apart, so I have to do something. Part of me says, once the hospital visit is over and Wednesday’s shower, I have a few days of normality, wait and see what happens then. Then I find myself wondering if I am the right person to decide at all.
Maybe, I should talk to Adam about it, and do what I do with the rest of my life, trust him, to tell me what is the right thing to do.
Thank you, I do think I needed a kick from outside, sometimes, we get so tied up inside, we forget they have a view.
(((Hugs)))
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