Last week was a Banner Week. I volunteered at my daughters school, did laundry, shopping, gardening, created over 16 signs by hand for the School Fair and run around for 2 days making sure the Vendor Section (my duty) was running smoothly. After all that I attended a neighbours party for about 3 hours. This has been unheard of for more than 5 years. One of the reasons – I didn’t sit on the computer either working or interacting with my Fellow Painies.
As my pain is neuropathic & mechanical – sitting at the computer is bad for me. Both types of pain are triggered by physical and emotional circumstances. They also feed off each other. Here are my issues.
The pain runs down the right side of my body. The pain varies in feeling and severity. Sometimes it is
Stress, depression and anxiety will cause me to have Neuropathic blasts of pain. For example; if I am in a low frame of mind – a comment from someone - with no mal intent - revs me up. Tingling in my body, followed by facial flush, the burning rod through my spinal column. A burst of high blood pressure begins and my chest tightens. I have trouble breathing. I try to keep calm by repeating my Good Mantra “all is ok, you are safe, you are sound, you are ok, you must breathe.”
I over analyze those comments in my mind. It eats at me and I start the self-depreciation with my Evil Mantra – one I try so hard to stop; “You are worthless, you are fat, you are broken, you are holding everyone back, you are failing your family, you are nothing, everyone would be better off without you.” This of course, leads to more pain. An internal battle not to beat myself up commences - but it seems to have a life of its own.
Various things trigger Neuropathic Pain Blasts – and there is no rhyme or reason – I know something innocuous to a healthy person is toxic to me.
I have Degenerative disc disease and several herniated discs; osteoarthritis in my C-Spine. Sitting in a chair will compress the vertebrae on sensitive and vulnerable nerves, exacerbating the pain. Lying down for too long will cause fluid to build up in little pockets inside the spinal column. This causes pressure around the herniated discs. That spinal fluid needs to move freely up and down – to keep things healthy and happy.
On the flip side – if I walk around, lift something heavy, move it a certain way, get hit by a pedestrian (in a store, mildly and by accident) or do something while mobile – I can trigger Mechanical pain.
So what is the deal? I just have to do what I have to do and see if it gives me a Pain Flare or not.
When it came to doing all these things last week – tired of being at home; the isolation eating me up. The pain from sitting on the computer and not being mobile was causing incredible pain. My medication was not touching it – so I know it is bad. I figured let’s try something completely different.
Afraid of pain as I am – I had to leap off the ledge and parent volunteer. Having never done this for either child, I was scared. I took my ever-present hot water bottle with me. Concerned they may think it weird. Kids don’t really seem to care that much. Some asked what it was and seemed satisfied with the answer. Others didn’t even notice it. The other parents – knew my condition - didn’t even question me.
My little one – was beaming from the carpet – so happy. Whatever residual or coming pain – was worth it.
The Spring Fair is the BIG event; raising money and a standard community event. I did a bunch of Graphic Design, Signs, Promotion and Writing for it. This required a bit of time on the computer and it was excruciating. The night before the Fair – I set the Vendors up, took the kids to swimming, did shopping and worked on signs until 11pm. The next day I was running around the school making sure everyone was ok. After all that attended a neighbourhood party – one I have never been able to attend in the past.
In previous years – this would not have been possible. That night I vomited, had severe pain in my head and was very tired. The next day it felt like Iwas drinking heavily for about a month. A friend came over and saw me. Her ex-husband is a Chronic Painie – so she gets it.
She asked me if this is what happens when I push myself too hard – I said yes. She asked if it was worth it – I said yes. She had commented – watching me the previous day it was like I was a new person. However, it concerned her, I was pushing myself to hard and asked why I did it.
My answer – For so many years I have been immobile; either chained to a bed or chair. For once I felt freedom. Freedom from the confines of my illness, freedom from isolation, depression and restrictions. I was myself – for a moment. I was the old me. The one that is still here. All the residual pain was completely worth it.
I was able to show my kids; I am an active participant in their lives. I felt a tremendous sense of accomplishment. Isn’t it strange that walking around a Fair is an accomplishment for us? For others, normal.
The pain flare lasted about 36 hours. This week I have gardened, shopped and walked. My ability to do this – is notable – I have not been on the computer as much in the past month as in previous years. The reprieve allowed me freedom in other ways.
Having said that, I still need my Painie community. I have no one to talk to about my weency achievements or failures. Nobody else understands. My good friend and fellow Blogger, Phylor hasn’t been on the computer as much as she likes, due to her pain. Her Blog Post inspired me to write this. Her physical pain issues are different than mine, but the emotional pain isn’t. We both use this forum to get emotional support through mutual experience and understanding.
How do we balance getting better both physically and emotionally. We can’t get better if we are sedentary. We can’t get better if we don’t have an outlet to express ourselves.
Maybe we come together and find a way to communicate without pain? I know I need all of you. I also know I had several messages on my Facebook Group and comments on my Blog – none of which I had returned. Supporting other people, helps me with my pain too. We need to make sure those that don’t respond to us right away are not chastised but understood. The last thing we need is to think we let someone else down again.
I wish I was able to predict what exact behaviour, movement or activity sends me into a pain flare. People are frustrated as I miss email constantly. I just can’t do the computer like I used to. The time I spend on the computer is usually dedicated to work, my Blog and my fellow Painies. I can’t afford to just sit and read email all day.
Also, it is like I got my legs again – and they are meant for walking. I am going to walk for as long as I can. I am also going to write, read and chat as much as I can. I just have to figure out the balance. The body hurts when I write – but the heart hurts when I don’t.
Kathleen Hogg provides new and/or existing business with Creative Design and Business Consulting Services.
I’m so glad you got out and about and were able to share your mobility with your family.
I so understand the need to remain connected to those who implicitly know what you’re feeling.
It’s finding the balance that’s can be the difficult part.
I felt like I was reading my own feelings in parts of this for sure. I have neuropathic pain in the abdomen I also have degenerative disk disease and herniated disks, continuous muscle spasms in my neck down my trapezius muscles. That partnered with my adhesions, ventral hernia and blood clotting disorder, makes me feel very useless most days…today being one of those days. I pushed myself this week…as I do about twice a month, then I spend a week recovering…so about 2 or more weeks per month I am in bed…I sometimes think its worth it, and sometimes dont think it is. I get so frustrated not being able to do “normal” things, I just wanna jump up and go do what needs done…and get ticked that I can’t…which makes the pain even worse. I have had 2 complete meltdowns over this in the past 2 weeks…I just don’t know how I am gonna live like this for many years…I’m not quite 44 yet….but my body is 90. I feel like my marriage is gonna fall apart…if I was him I wouldn’t wanna be with this sick, broken, negative, bitchy woman. He is a saint most days, but I can only imnagine he gets sick of hearing about my pain. At any rate, thanks for sharing, it always helps me when I read about others feeling the same as I do…especially on my worst days. Tonite I am in the fetal position crying…tomorrow I will try to put my “actress” face back on and do what needs done…