Faith from the Edges

Faith and life from the perspective of me.

Archive for the tag “neuropathy pain”

Chronic Pain is not my Friend

As most of you know dear readers I live with a chronic condition – rheumatoid arthritis – I also have bursitis in my right hip. Neither of these conditions are visible so that makes them part of the invisible illnesses that many of us live with every day. This past winter has not been great for me. We have had a lot of humid days and  not enough cold, cold days. This has meant that the inflammation in my joints has been at times overwhelming and present All The Time!

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Inflamed joints – thank you RA

This picture is one I sent my best friend and my sister a while ago. My hands were so painful that I was in tears much of that day – therefore the title of this blog. The only thing I can do when this happens is to stop, take some extra pain medications (on top of the other medication I already take) and rest. Which is what I did.

I also live with peripheral neuropathy which was caused by the chemotherapy drugs for my cancer. Not everyone who has chemo has this side effect but I do. It means that my feet have constant numbness. tingling and sometimes excruciating pain. It’s hard not feeling parts of your feet and getting used to always having some kind of shoe on because you can’t feel where your toes are. Again an invisible condition and one that I am learning to cope with.

Here’s what’s been happening lately. I am dealing with a feedback loop of pain between my RA flares and the neuropathy in my feet – which means that sometimes I can barely stand up on my feet and the numbness and tingling begin to go up my legs. Chronic pain is not my friend and it is definitely not the dear one’s friend as he has to pick up the slack of what I can’t do during these times.

Now you may be asking why I am sharing all of this with you. I mean really does anyone else need to know? Obviously I think the answer is yes, but I know others may not. Here are my reasons:

  1. When I am in pain it becomes very difficult for me to engage with anyone in a good way – whether it is on social media or in real life. I am grumpy and can barely focus on what others are saying to me or asking me to do. So when I get quiet on social media this is why.
  2. This affects my mental and emotional health – it is hard to stay sunny & energetic when you just want to curl up with a warm blanket and your cat – it is hard to get past the pain. Mostly I do but often I don’t. There is a clear connection between my pain levels and my mental and emotional health.
  3. Resting because of bad pain days does not mean I am lazy it means that I am taking care of myself. I am saying that here because we all have that voice in our heads that says things like that and I am learning to give myself permission to just stop and take care of me. If I don’t take care of me I won’t have the energy to do the things I am really passionate about.
  4. So much of what those of us with chronic pain go through is invisible and unspoken. We don’t want to be seen as whining, not strong enough, not together enough. We want to be perceived as independent, strong, capable people and mostly we are, just sometimes we aren’t. I want to be able to ask for help when I need it without the added stigma of incorrect perceptions.

Here I am today, feeling mostly okay. The pain levels are at their most manageable and I have been able to get this blog post done. My commitment to myself is to give me a break and to also give others a break. We are all dealing with stuff and we are all, mostly, doing the best that we can.

 

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Life between Chemo Sessions

I admit it, I still don’t like saying the words that I have cancer and in particular I don’t like saying the words ovarian cancer. Hard words to say, harder I think for others to hear. I keep reminding myself and others that my prognosis is good, that I will get through this, that my hair will grow back, that my energy and focus will come back, that the neuropathy pain will subside, that there will be life after chemo. Right now, however, my life is what I do or don’t do between chemo sessions.

Ovarian Cancer Canada Sunflower

This has been a difficult week pain wise. I am dealing with peripheral neuropathy pain which is a side effect of the chemo medications. This means that I am getting numbness, tingling and worst of all burning pain in my feet, lower legs, hands and lower arms. It has been hard and I have been grumpy and not sleeping well. I have been taking pain meds and am on a longer term acting med (which takes time to build up in my system) to deal with it. My health care providers have told me that it is likely that this will last for several months after the chemo treatments have finished.

Sharing all this not to look for sympathy but to let others know what it is like to live on chemo – it is hard. Be gentle with those of us who are dealing with it. Ask before hugging, it may not be a good day for it. Pray, if you pray, for those of us living with it to have the strength and courage to get through it. I have shed more tears of late than I thought I had left in me.

Life between chemo sessions right now is about managing the side effects, making sure I get enough sleep (thank God for afternoon naps), drinking lots and lots of fluids, eating the right foods, watching more TV than is probably good for me, getting some small tasks done each day, hanging with the dear one, remembering to take all my meds and supplements to deal with the side effects, small walks that get me outside, reaching out to friends and family for love and support and sometimes just being.

Rocking a scarf and earrings! Some days are good.

I know I haven’t written a lot lately, it takes a lot of energy to write. Hopefully when I am through the chemo life there will be more to write about. In the meantime, thank you dear readers for hanging in with me, thank you for your notes of support, for your prayers and your good wishes. Not doing this alone and for that I am most grateful.

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