Pain Changes You!

So…… my plan to get back to blogging regularly back fired. My last blog was posted just before my 30^th birthday. Full of anxiety for what the year had in store. Many had told me, relax, life begins at 30. Fuck me were they wrong/ right. This year has been a tough one. Moving back in with my mum. Sharing the same room and bed. I lost a very special person to me and then my business partner. Got super busy with work and had lots of personal stress and pain to deal with. I had hoped by now I could report some calmness. But that is yet to come.

It is a Saturday and I have just finished work. I had two days off for Christmas and then client Christmas parties and hospital appointments. I am a little panicked about money, so I have been kicking myself for it ever since. I am currently setting up a new business and had hoped that would be ready to launch at end of December. But like most things this year, it wasn’t to be. So, in that spirit - goodbye and good riddance to a frustrating and tough 2018 and hello to 2019! Clean, fresh new year, with good people, good vibes and positive moves.

In October I posted up on my social media about the key questions, concerns and lessons learned from living with chronic pain and chronic fatigue. I was overwhelmed by the response. I had some great conversations with amazing people.

Here are a few of the responses:

@sweptaway91 – Frustrations - not being able to do all the things I have planned (and never knowing how I will feel tomorrow and how much will I be able to do). But lesson learned - I started to value my time and set boundaries

@allyoops541 - I'd like society to try and understand that we aren't ill on purpose and we don't wallow in it or enjoy feeling the way we do😊

@nicbunce - That you can't let pain stop you from doing what you want to do. Find a way to endure and persevere, and live your best life

@myfibrohome - As hard as it is you have to get on with it. When you stop and give in to the pain it wins. This can be mega hard in a lot of situations, but you have to grieve the things you can no longer do and accept the pain is part of you and it's a new chapter in your life. Acceptance is massive and took me years. Things will get better, but you have to work for them and every day remind yourself of something positive that you did or achieved. Cling onto those positive moments and accomplishments as they will get you through on the darkest days. Xx

@lizdelaney - It’s been a roller coaster for me for 4.5 years. Lost a great job working for Apple, hid in my room for basically two years in pain, and have had a tough time dealing with the withdrawal from family and friends... life in general... as I protect myself from sound now (my big trigger for ATN). I don’t take pain meds as I have a huge fear of addiction and increased pain levels. I started Aimovig and it’s helping I think in case anyone is looking around for ideas. Am cautiously optimistic!! Not a drug. :) I am learning to ask for help and advocate/take care of myself better finally.

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One of the blogs I have often sat and thought about writing was how pain changed me as a person. It was a reoccurring theme for a lot of pain sufferers. We lose so much to pain, but we also gain so much knowledge, insight and depth. For someone who’s worst day is having a cold or a toothache, you will never understand. But for those who live with this every day I know you know what I am talking about. One day you thought your life was mapped out and all you had to do was focus and work hard to get there. Then overnight, things completely changed.

Trust issues

One of the biggest issues that I have discovered with pain, is I now have serious trust issues. This is not a direct result of pain. But what pain has done to my relationships. I literally lost everyone close to me within 2 years of my pain and operations. My partner, my family, my friends. I lost it all. Now I just don’t let people get close to me.

Lack of close relationships

Pain has made me withdraw massively. I used to be an ENFJ, but I am now firmly an INFJ. I just cannot make connections easily. I panic about what people will think when they find out about my illnesses and pain. How will they react or judge me? Will they believe me? Will they think less of me as a business person, a girlfriend or a friend. Pain has made me scared of the world and scared of people. People don’t mean to be unkind or unthoughtful. They just don’t understand.

Loneliness

This leads into loneliness. If you never let anyone in, you never have anyone around. I have a very small group of people around me (3). At times it can feel really lonely. When I feel like this, I usually try to meditate, watch an inspiring documentary or speak with my group of chronic pain and fatigue sufferers online.

Anxiety

I started to become agoraphobic a long time before my pain and operations. I was attacked at 17 on a bus and never really dealt with the PSTD symptoms from then. But after my operations and the mobility issues I physically couldn’t go out and going out was a real undertaking. I became so anxious that it was just easier and safer to stay in than it was to try and face the world and all the horrible things that could happen. I panicked that all of my hard work I put into recovery could all be undone by someone else. I could be beaten up, I could be run over, I could fall over and bash my head on the pavement.

Low Self Esteem

Living with pain and fatigue everyday is exhausting. Coupled with skin problems, weight problems and lack of happy hormones it is hard to look in the mirror and say “Stef I love you, you are beautiful and I am proud of you”. I don’t believe any of that. And unfortunately, 2 years of CBT have done little to improve that. On a work’s Christmas party last week I was told by no less than 8 people in one day I was a beautiful and talented woman. 2 random people approached me on 2 separate occasions to tell me that I was cute and I needed to be more confident and believe in myself. Despite all of that, the little voice in my head just said; “Stef they are drunk and lying”. But the reality is, they had no reason to come up to me and tell me that, other than wanting to. One of them was even with his wife at the time.

This is definitely something I know is my biggest barrier. More so than the pain and physical limitations. Confidence is so important!! It makes us feel better about ourselves. And when we do, we usually find our pain reduces.

Anger & Jealousy

I was never an angry or jealous person before pain. I would say this only capitalises 10% of my time. But that is still a huge part of my life. I often feel angry and jealous when I am suffering my worst days. Social media doesn’t help. Seeing all of these so-called perfect celebs being paid to post a picture and endorse a product while I work from home struggling in pain every day - trying just to get through the day and do my clients proud. I look at all of my old school friends who are married with children, going on holiday and spending time with their families and I think why couldn’t that be me? Life had something different planned for me, that’s why!

So, pain hasn’t changed me all for the bad. There are some really lovely things pain has given me:

Compassion

Pain has definitely made me more compassionate. Before chronic illness, my idea of helping people was charity - doing a fundraiser or giving money. Now I know the best use of my time and money is by actually helping people and being there for them. There are so many other people out there that have it 100x worse than me. I am one of the lucky ones. I see how they struggle, but also see their courage and truth. Since the pain, I find it easier to imagine myself in someone else’s shoes. Think about where they are coming from. What made them behave that way. What is the real reason for their actions? It has allowed me to use that skill to help my business clients and my blog readers. It has also helped in my personal relationships too.

Honesty

Chronic pain and fatigue have made me more of an authentic and honest person. While I hide some of my illness to certain people, I am more honest and open with people close to me. No one likes having those awkward or hard conversations, but I will, and I do. If I am pissed off, in pain, hurt, upset. I let people know.  

Makes us stop

One of the themes you will see time and time again is, pain makes you stop. Many of us were working stupidly long hours, looking after family and/ or friends, we were maybe studying and dealing with a bunch of other stuff we shouldn’t have. The burden was firmly on our shoulders. Then one day your body says…. “no more” and you come to a resounding halt. Life stops for a while. All those negative and dangerous things you were doing to yourself. That dream job you were busting your ass off for… that relationship you were fighting for. All of a sudden, none of that matters because here comes your body to stop you! It’s tragic I know. And you must morn for the life you lost. You’ll probably lose several lives during your time with chronic illness. But the positive is, it wasn’t the life that was meant for you. Those things were not for you. Not now anyway. If they were, it wouldn’t have been so hard.

Chronic illness, pain, fatigue and anything like that is a sign something isn’t right. Sometimes you need to stop and take a look around. Revaluate your life!

Gets rid of the deadwood & helps us to appreciate

I am already conscious this blog has been going on for a while, so the last point on my change list is…getting rid of the wrong type of people, jobs, experiences etc and appreciating what you have left.

Much like the point above. Illness makes you stop and evaluate your life and what you are doing. It also helps to clearly highlight the good and bad in your life. Now more than ever you will be able to see how badly people have been treating you. How they use you. Equally you will realise how amazing others are. You’ll see how that 60 hour a week job was filling you with dread every morning and how your true passion and skill can be found elsewhere.

In today’s society we spend so much time thinking about material things. We must own a house, have an iPhone, drive the nicest car. We work our arses off… for what? Something that gives us a small amount of pleasure. When in reality, sitting at home cuddled up on the sofa with our loved one or our pet, drinking a cup of tea is more than we will ever need. It’s the little things in life that make it special. It is about happiness and spending time with the people you love.

Summary

Often it is easy to discount and overlook where we have come and how pain has shaped our lives for the better. Yeah, it’s all pretty shit! But without this pain we wouldn’t be who we are today. In my darkest days I feel alone, jealous and angry. In my best days I feel grateful, strong and empowered. How can pain be so debilitating, but yet so liberating?

When discussing this subject with a cancer sufferer, we talked about how sometimes we feel the best thing is to put up a strong front and fight our body. We feel like it has betrayed us and is punishing us. Other times we have to stop, we have to rest, and we have to nurture and take care of ourselves. Just like we would an elderly relative or a sickly child. We just want to feel comfortable, to eat well, drink fresh water, meditate, listen to some music or watch crap tv. There always comes a point where we can’t keep fighting our bodies, but just have to relax. Ease into the pain and let the ship ride the waves naturally.

In a letter I wrote to my friend titled “a letter to 53-year-old you”, I talked about how we discount what we have now in search for this future happiness, future love, future fulfilment, this future miracle or moment when everything makes sense and the lightbulb switches on. I am a firm believer that everything happens for a reason. But what if we just took a moment right now to be thankful? To feel free? To say ok body, I am listening to you and I am here with you in this moment. We can do this together and I trust you.