Sunday, September 17, 2017

You are more than your pain



When you suffer from chronic pain daily, it's difficult. It's difficult in so many ways. It's difficult to remember who you were before the pain started and in some cases, it's difficult to remain positive. I, myself, struggle and I'm sure many of my fellow pain sufferers do too. I keep being reminded of something by those dearest to me.

I AM NOT MY PAIN. I am so much and so are you. Chronic pain is just one part of the person you are, even if at times it feels like it makes up your personality. It does not. No matter what happens or how severe your pain gets, you will always be you. It is not always easy to remember this, however. This is why friends and loved ones are so important. They can remind you when you need it most.

Sunday, September 3, 2017

Falling Short of Expectations

I have friends and acquaintances are working out several times a week, including a few who ran marathons over the summer. I'm not talking little short ones, either. Some involved running up mountains. In contrast, this past week I had an evening when I almost passed out from IBS cramps, and I had to crawl to all the way up the stairs to reach my room. It took a good 24 hours before I could start working through the worst of the anger and hurt of being let down, once again, by my body and begin laughing at it.

As is common with those who have chronic pain conditions, I have a big weight problem. So many of us have been told if we were simply more "physically active" all of this would magically disappear! I often read people are told by uninformed people their chronic pain conditions are caused by being overweight, rather than what is usually the case; our weight is the combined result of being unable to be physically active due to pain and the side effects from medications. 

Being unable to exercise has made weight loss tricky. After much...let's call it "weight loss program research," I have found Weight Watchers meetings, specifically the one I attend (incredibly supportive group AND it's early enough I can do my weigh in before I eat breakfast), to be the right program for me. A huge part of the success of this program is they don't pressure me to be physically active.

Since temporarily stopping my trigger injection therapy three weeks ago, my pain and fatigue levels have steadily risen. I needed both the railing and my cane to make it up the stairs to the WW meeting room yesterday. My friend and I were chatting after the meeting, and the meeting leader came by to say hello. We ended up discussing my almost passing out from IBS cramps a few days ago. I admitted how upset I had been at myself for coming that close to passing out over something as simple as cramping, how I felt like I was a wimp for being in the position in the first place, and that I was whining when I said anything about it. That's when she stopped me and pointed out I was expecting far more out of my body than it was able to give me. I had gone to the extreme of forcing myself to stay conscious. In my own way, I put my body through as much torture in that evening as someone else may put theirs through during one of the more extreme marathons my WW leader participates in. Maybe not the one where she ran up mountains, but it sure felt pretty close 😉 Now I could have chosen to be annoyed at being told it was ok to pass out from overgrown intestinal cramps. (Ok, so I may not have completely gotten over my body's latest betrayal. It's a process.). But I knew she was right. Just like I knew she was right when she suggested I send someone up to get the (key operated) elevator on my next bad day.

Yesterday's topic was getting out in nature and being active. We live in the Fraser Valley in British Columbia. The valley is surrounded by gorgeous mountains, with waterfalls and glacier-fed lakes. Our city's many hiking trails offer varying levels of intensity. My WW group is going to meet for a hike on one of the low-intensity trails soon. I have already given myself the first of at least a couple of talks on whether I should sign up. If I can get at least two trigger point injection therapy appointments, I will try it. If not, I'll take my dog for a walk instead.

Either way, I will do my best to not make the same mistake twice in a row. Sometimes I fall for the same "I look as healthy as X" trap as people who don't see me often, with the added bonus of feeling somewhat ok as long as I'm sitting. I start thinking I really can do all of these wonderful things I see other people doing. So I try...and succeed at first. Then I fail miserably. So I will slow down, take my time, and get there at my body's pace. There will be more hikes. If I'm unable to make it to a hike this season, the mountains will still be there in the spring.



Wednesday, August 30, 2017

Positivity in Pain and Pregnancy

It's been a rollercoaster 9 months...well longer in actual fact. I had always thought that because my pelvis and back are so painful I would never be able to be a Mum. I fought with myself for years about whether I wanted to put my body through it and then I met my wonderful man. He deserves to be a Dad so much and promised me we could make it work even with pain and certain limitations. He was the positivity I needed. 

Fast forward to 36 weeks pregnant and a check up at the doctors. All along in my pregnancy I was reassured that if I didn't feel I could labour (which I definitely can't, sneezing is agony) I would be supported in my decision to opt for a c section delivery. I have ummed and ahhed all along, occasionally feeling positive that I can do it and more often resorting that the less strain on my body the better able I will be to take care of my baby when it is here. 

So imagine my fear when the consultant last week, week 36, decides to remark casually that there is not enough evidence to warrant a c section and that ultimately it is his decision. I was livid, furious and scared. 

He explained that the reason I have no evidence is because nhs doctors don't treat coccyx and pelvis pain conditions, they don't operate, there is no treatment but that ultimately that means that all the evidence I do have is of symptom management treatment which is not proper medicine. As if that's some consolation! Like I don't know I haven't yet been heard, seen or treated properly!

I pointed out to this doctor calmly that we feel very strongly that if I was to labour I would aggrevate my condition to such a degree that I would be unable to care for my baby, demonstrating that I have had a year off work for less challenging tasks. He said that as it was his responsibility to protect me he would have to weigh up the risks of Caesarian section to which I replied that if he let me labour naturally there would definitely be life changing consequences which he would be held accountable for and that these would be against my wishes. He conceded. 

The experience has taught me a few things: firstly, if you think you might have a fight on your hands stay vigilant, it will come eventually. I was ready for this fight twice before and both times was told "if you want a Caesarian you can have a Caesarian". As soon as I let my guard down there it was! 

Secondly I learned that I am my best advocate. He is not in my body and mind, he doesn't lose the ability to weight bare after a small amount of lifting or bending. It's not him that has to take this baby home and hope he can always get it out of baths and cots and high chairs.

Thirdly and most importantly I learned the power of preparation. I had notes and reports and statements and written testimonies and he still quizzed me until I cried. Without those things it's very hard to be taken seriously. But whatever you have you must stand up for your needs because ultimately it's you that have to live with the decision that is made. Our pain is our passion and we have to use it! 

SZL

Tuesday, August 22, 2017

You Can Do It and You Are Heard

Pain is isolating. It can cause feelings of loneliness in a crowd of people. There's nothing like the feeling that you hurt, but no one else feels your hurt. Even if someone is understanding of your pain, they can't feel it the same way. 
My goal is for no one in chronic pain to have to feel alone. I don't know how to go about accomplishing this goal. I can't reach everyone who suffers. All I can do is share my message of hope through my little blog and wish it to the right people. 
If you feel that you are trying to share your story and no one hears you, please know that someone will listen if you share enough. Use your voice to educate. 
If you feel that your pain makes you a burden, it doesn't. You are very much needed, even if family and friends don't show it. I may not even know you, but I need you.
If you feel that you can't do it, can't face the pain one more day, please know that you can. No matter how hard it feels, you can do it. Look at how much you have survived. You are fierce!

Tuesday, August 15, 2017

10 ways to self-care when with chronic pain.


1- Prepare yourself for the day slowly, take your time and do not feel like you are obliged to go somewhere or to do something to reduce the stress.
2- Put comfortable clothes, pamper yourself so you can  feel good about yourself.
3- Always be gentle with yourself when you look in the mirror and try to love the skin you're in
4- Never criticize yourself, you are doing the best you can.
5- Don't keep it all to yourself, open up to someone you trust.
6- Don't feel bad when you are invited and you cannot make it.
7- Join a support group or go online watch some videos and read some stories of other people who can be in your shoes for you are not alone.
8- Consider adopting a pet, they will give you a lot of love.
9- Try your own alternative treatment; meditation, aromatherapy, acupuncture, stress-reduction techniques, special diet or natural remedies.
10- Remove the mask from time to time and allow yourself to be "not okay" and seek some help when needed.


Sunday, July 30, 2017

5 tips to stay sane while in pain.



                                


Most of the time when we talk about chronic pain and illnesses, we tend to talk about the physical aspect of it, how we feel, how much it hurts and what we cannot do because of them, however we forget a very important aspect which is mental health, how we see ourselves and how we cope with all the changes all the time.

1. Acceptance is key, yes I am sick and yes I am different from the person I used to be, it is important to be prepared for the worse but still expect the best.

2. Find your thing, the thing that makes you feel free, happy.. Find time to do the things you love, even if it is for few minutes, eat something you love or just cook something for yourself if you love to cook, Watch your favorite movie or series and in days you can go out, just do it even for 10 minutes, breathe real air and enjoy the moment. If you love to sing do some karaoke online, if you love to draw, paint or whatever do it when you can and let yourself be yourself again.

3. Love yourself, I know it is hard, you feel either too thin or too fat and your hair doesn't always look good, your face can be so pale or so red due to flares and you don't feel beautiful but it's wrong, you are, look at yourself in the mirror and do the things that will make you feel better, put some makeup on and put your bra on even if you don't go out, put your favorite pajamas, brush your hair and smile, laugh with the people around you, you are loved.

4. Never compare yourself to others or ask why you or why did it happen, it is your life now and everything happens for a reason, good things await for you despite the pain.

5. Talk about what you feel, find a way to let it all out, talk to a friend or a family member or it you cannot..write it down or go to therapy. Sometimes you don't realize that you are in a bad place unless you say it out loud.

Thursday, July 6, 2017

The Power of Personal Mantras


It has been said that a personal mantra can have many benefits. It could help us regain lost confidence and soothe anxiety. My newfound mantra helps me regain my focus on more positive things when my mind is in a funk. It is key to moderating the highly emotional responses that I tend to lean towards.

I've been in therapy for a long time. The idea of a personal mantra is not new to me. Therapists have often touted their benefits. I've mostly brushed the idea of them off until now. They were either a waste of time or not going to work on someone as damaged as me.

I've come to realize that everyone is damaged in their own way, that needing help is not weakness. It is, in fact, a huge strength. I've also realized that my mantras are not a waste of time. It's the exact opposite. It is a key in keeping me from becoming a melting puddle of stress. It often gets me back to a productive state of mind. So, mantras equal time saver! That's the first thing therapists should push when they're selling the mantra concept.

In what specific situations have I needed to use my mantras? What exact words are they?  Mantras work through repetition. During anxiety attacks I repeat the words “I'm ok” until I believe it. I follow that mantra with thoughts of specific situations that have made me happy. Sometimes I talk about them out loud. It can be something as simple as an unsolicited text from a friend.

If I'm angry, my mantra is “You are capable of calm.” It often saves me from completely flipping out on people. It also helps me in other extreme emotions. The hardest part is getting me to believe them, but I'm getting better.

I'm creating new mantras and using my standby ones almost every day. I can't believe it's taken me this long to see the powers they offer. They calm me down, pep me up, and give me hope when I'm down. What a powerful tool!


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