When I wake up in the morning, the first thing I do is assess the state of my head. I have actually been doing this for some time, not because I want to, but because it is necessary in deciding what I do next to get myself moving.
Can I just say that some days are better than others?
What I wish I didn't have to say is that I never, ever wake up with a ZERO.
I hope for a 2, or a 3, or even a 4.
After that, it gets touchy.
Some friends have asked why I don't stay in bed on those 8-9 days.
And the straight answer is that it will stay that way if I don't get up. If I do get up, get in the shower, get moving, have some tea, take some Motrin, put some heat on my neck, there is the hope that I can get it down to something more manageable.
That's the reality.
I love that you appreciate my positive attitude, and my stubborn resistance to this saga that has become my life. Your encouragement always means so much.
But I have to keep it real. I couldn't lie to you. You've all become like old friends, moved away maybe, but friends still.
The truth is, some mornings, I sit and drink my tea, and I cry. Like now.
Not out loud, just lots of tears.
It's the only time that I could write about it, in the middle of it.
The pain wears me down after a while, and all the things I love about my life seem not so important.
All the things I want to do in my life seem expendable.
For just a while, the pain wins, and nothing else matters.
I give up to it. I surrender. I'm done like toast.
The advice I get is call the doctor. And yes, I will call him. And he will say ONE of TWO things.
(I was a nurse for too long)
ONE: it is too soon, you are still healing. (Translation: this is the reality of a Chiari patient, the headaches and all of it, forever, as it is well documented that decompression only stops the progression of the problem, it does not make it 100% better)
TWO: let's do an MRI (Translation: we'll find that it is really not fixed after all, and we'll schedule surgery #2)
You see my dilemma, right?
I don't want to hear either of those things, though I am sure at some point I will. Just not today.
I can get through today.
And call it genetics, call it chance, but somehow or other, I am possessed with this determination, this hard headed, pig headed, I can do it attitude. And every day, I call upon it to pick me up, and move me forward, to make me believe that I will be OK, to make me believe that indeed I CAN do it.
I feel like crying along with you. I can only begin to imagine how hard it must be to have your head hurting all the time. Headaches are horrible. I know because I deal with them regularly, sometimes daily, but I usually get a break from time to time. I can't imagine not having a break. I was hoping and still am that the surgery will take your pain away...at least to a one or a two. And, on the other side of this there is your strength to push on just about each day. You accomplish so much more than many of us ever would under these circumstances. You're amazing and inspiring even when you share how hard it is. I hope you can receive some comfort in knowing that when I and others read this that we cry with you, feel for you and care. I will continue to pray for you I'm not giving up hope for better, less painful days ahead.
Pain sucks. Pure and simple, that is the truth of it. There is no weakness in letting the tears flow. Sometimes it even helps, as long as you don't wallow in self pity (which I don't think you do). I know that having to get outside to take care of my sheep helps me, even when I can barely walk because of my back pain, and I know for sure that struggling to get back up off the ground is worth it when the reason I'm down there is to snuggle a lamb in my lap. You are a strong woman, even if you don't feel like it at times, and you get a lot done despite taking care of yourself. Keep up the good work!
It is ok to give in to a down day, even though you have more than most (with the headache and all).
Spring will be here soon enough and you will be taking great walks with Roy to walk through the pain.
Wish I could make it better for you but all I can do is send you my happy thoughts and hope you catch one!
Now you are making me cry. Take as much motrin as is required and keep a warm pack on your neck and shoulders too. Your tenacity amazes me and still... I know this is so hard for you to live with.
Hilary I can relate somewhat as I have scoliosis and spinal stenosis and age has not been kind but still not as bad as a constant headache. My worst times are and night and sometimes I just lay there and let the tears flow but like you the next morning I get up and get on with it. Difficult to sleep and some nights what works is I lay there and repeat "it could be worse" over and over and count my blessings and think of things I love doing. Hang in there!
Darling Hilary... Reading this makes me wish I was a neurological surgeon that would fix you in flash. You're so right about what the Dr would say. Another MRI would at least show if there is further damage and then you have choices. It doesn't mean that you would have more surgery if needed.
That song " Big Yellow Taxi" is so right. You don't know what you've got, till it's gone.
I try to live by this every day. to be glad that I have a sore knee. At least I can feel it. You know what I mean.
Do you wear a soft foam neck brace? Memory foam pillows, meditation and pain killers will help. I'm not very good at really saying what I mean but I am with you and think of you often, sending healing thoughts. XO
I don't know what to say, Hilary because nothing I can say will make the pain go away. I still think you should contact your doctor, but this is your life and you can do what you want. Or, in this case, what you are able. I so admire you.
I feel like crying now to ! You poor thing I can imagine how much it hurts let a lone have it every day ! You are a very strong person to keep on keeping on with this as I would of seen the Dr already and demanded they do something as the pain is running your life ! I can understand why you haven't gone to the Dr as well ! I do so hope there is good news and that modern medicine can help you get rid of the pain or at least lessen it and let you live your life like you deserve painless !
BIG HUGS HILARY! I'm so impressed with your attitude. years ago i lived with pain that consumed my every moment both awake and asleep. was considering the decision of life being worth living when the problem was finally diagnosed by a brilliant surgeon.
You're way tougher than i was. hang in there.
Chronic pain sucks. Nurses and doctors make bad patients. I have had to be my own advocate in health care. If you are tired of the pain, you should do yourself a favor and stop predetermining what will be said, get yourself to the doctor for a follow up appointment, and don't accept the answer if it doesn't create a solution/acceptable answer. Then if you can't get an answer that makes things better, you find another doctor. Stop suffering and telling yourself it's all there is.
Sorry, I don't mean to sound harsh. I've had my medical issues, and pain. Occasionally, I need someone to be tough with me, and make me push forward.
((((HUGS)))) I'm there with you crying. For your pain, not mine. I have nothing compared to what you are going through and as of right now I am going to quit bitching about my problems.
You can and you will. And a thousand miles away, people who don't even know you will think about you and pray for you, and hope it does get better.
I really wish there was something we could do. I'll just keep praying for your relief and you keep resting and doing whatever gets you through the day. I hope tomorrow is better. Hugs, Deb
You are so brave, and I hope & pray for you to have zero pain,. It is certainly ok to just cry, and relieve some of the tension.. There are no gold medals for tolerating horrible pain and being strong, if there was I would send you a stack!
To be able to have a positiv look at life you sometimes need those days/moments when you let it all go and just be sad. Life with everyday pain gets to you and no matter how positiv person you are, you just can't be ut always. The trick is to have those moments and then be able to move on forward with a smile in you heart.
Take care of yourself.
ok .. maybe just maybe you need to pull up those big girl socks and get that MRI .. you waited far far far too long to get this attended to in the first place which may or may not be part of why recovery is slow ... i feel i can say this to you because we are old friends .. just like i told Kate to 'get over it' yesterday ...
once long ago when my late mother wasn't feeling well i asked why she didnt call/go see the doctor .. her reply was 'he will probably put me in the hospital' then she said 'didnt you ever just not want to know what was wrong?' .. my answer was no, i want to know now not later now before it gets worse .. oh and she did end up in hospital another week later brought in by ambulance because she was experiencing congestive heart failure ...
shutting up now
.... I keep coming back to the same thought, Hilary. You are still leaning over a loom quite often. It is stressful on your head neck shoulder muscles.
I'm telling you I had to GIVE UP the barn work for two years. And slowly get back into it. And I only do half of what I used to do.
I think that sometimes one just need to have a really good cry to let out the pain/frustration/anger of the situation. Hopefully, you feel a little better getting the tears out and then can move on.
You have been incredibly strong through this healing process. I wish that you were closer to the end of your recovery journey.
Perhaps a visit to the doctor or the dreaded MRI would at least give you some new information to ponder - you wouldn't have to do anything - just have a bit of knowledge to process.
Sending good thought your way ...
Getting up and moving is always the best choice. I speak from experience.
It sounds like you are doing all the right things. Press on.
I cannot believe after all you have gone through that you are still in pain. I am in the majority of your blog family, go have the MRI - at least then you would know. You are a very strong and vital woman, and you need to get to where you can enjoy life again. I am so sorry all of us can't do more. But remember, we all are there for you - tears and all.
I understand how you feel about the not wanting to call the doctor. But it's also painful for those who love you to know what you're going through. It is of course your call though. Daryl is a real pushy broad.. but she's not wrong. ;)
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