Side Effects

I have an undifferentiated connective tissue disease since 2007. You might have read about my issues in some early blogs. This has been a trying journey and has changed me as a person. I think for the better but I will let others be the judge of that. Chronic illness and pain have been constant companions particularly in the early days. Not knowing what is wrong and if there is ever going to be an end to this pain shakes you up at many levels. The inability to even move your eyelids without excruciating pain was the nadir of this hard time. This led to loss of self-worth and self confidence too. Acceptance came with some understanding of the disease and a diagnosis. Strange how people get hung up on the labels. I am not bothered about the label so much as understanding the reasons for my symptoms and that the treatment was totally symptomatic right now. Thus, irrespective of the label the treatment remains the same. Having accepted that this is for life unless there is a miracle got me to the next step of identifying what to me and my husband is an acceptable quality of life. We certainly never wanted to be stuck in bed in constant pain unable to self-care.

This started what I think was a hard journey to taking the scary and dangerous drugs. People say they have side effects and will kill you and I quip back that my body is already killing me so what I am looking for is quality of life and not quantity of life. I wanted to be able to self-care, do house work, cook, go to the shops and even occasionally go out as the minimum I look for in life. My husband also identified that doing everything like caring for me, house work, cooking and full-time work was hard without any help. We made massive changes to our life – moved to a warmer country as now cold weather is very hard too bear for me. Gave up the idea of working as that reduced a huge amount of stress. With that I had to rebuild my self-worth and confidence – it was akin to phoenix rising from the ashes.

I will not bore you with the details but I gave this background as I want to tell you about the good things that came with this illness. I reconnected with the inner child, rediscovered my sense of humour and reconnected with people both from the past and new ones. Spending a lot of time in bed and within the bedroom I made good use of the IT skills I had developed for work. I learnt the use of social media to create a social world that would keep me from being isolated. Social isolation is a reality no one ever talks about and we just pretend all is fine. That is so wrong as we hesitate to ask for help and others hesitate to offer help. As our life gets reorganised around managing the health issues, we are not the party animals we used to be. Hell! I am not even the same person I used to be, I think.

I have a Facebook account and I use as my profile photo one from when I was 21. People recognise that and find me. I have over the last 10 years reconnected with school friends from St Anne’s High School, neighbours, childhood besties, batchmates from College of Nursing AFMC, who I lived with for 4 years. All who got lost in the rush of life, work and families slowly were searched for and contacted. I thoroughly enjoy talking and catching up with all of them. I have a positive and happy approach to life, and just laugh at and about everything. It is a good coping mechanism. I have also learnt patience, mindfulness, learning to balance activity and rest, weighing up the worth of activities that I choose to do as the price of pain should be worth the pleasure I get. Go with the flow attitude was achieved with perseverance. I am not saying all is well in my world but that I am able to cope better with the slips into anxiety, depression and pain which though a normal white noise now, can flare. I have learnt to recognise the signs of the downswing and at once start pushing myself to do what it takes to get the mood back up as that enables coping with the pain. So, you see now that chronic illness while devastating has not been without its positive side effects. 

During this time, I joined a UCTD group on Facebook. For a long time, I was an admin as well in the group. I spent a lot of time talking to people who are all at the different stages of this disease and also different stages of grieving for what is the loss of self. I spent time not just monitoring as an admin but also befriending people and sharing my experiences with them so that they can learn from my mistakes and make better choices regarding all aspects of their care, being able to advocate for themselves and best of all be able to reach acceptance ….. as well as know that there is a light at the end of the tunnel even if it was a long way off right then.

So I invested a lot of time with people who needed someone to talk to … to vent.. to grieve with… to laugh… to share and to just be with…… And I am so grateful for the people I met as I learnt from them just as much as they learnt from me. Friendships have been forged across the world and across cultures and across languages that remain strong even when there are gaps in communication due to flares or personal problems. We slip right back into the grove as soon as we touch base. If someone is not around and you are not aware of any problems, we make the effort to reach out to ensure they are ok. There are generally no topics that are not talked about as this illness is all pervasive and we are not coy or shy any more. We will give advice from our experience, help research the issue if need be, contact others who may be able to help, have slap up virtual pity parties with cakes and cocktails. We rally around the one who is feeling weak and vulnerable and invoke the UCTD gang to virtually go sort out the people bothering one of us. The weapons of choice can be walking sticks, wheelchairs and anything else we can think of and carry. This venting and humour are so useful in coping for example we laugh about and at one or two of us who constantly fall over, or who have issues with gas – I think at one point we were talking about maybe starting our own bottling plant! LOL

So I was surprised and touched when in a messaging conversation one of my friends wrote this to me:

“Hah! I learned from the best! Seriously you’ve been such a good teacher and friend since I got sick. You’re my favourite side effect lol!!”

I was astounded to say the least and got very emotional about this – that is another side effect – getting emotional. This is one of the best compliments I have received in my life as it came from the heart spontaneously. When I laughed and said oh now I am a side effect my friend quickly said it just came out I did not mean to upset you. I said no no I like it. I have never been called a side effect before and am proud to be one. So, you see we find our side effects in every situation. May all your side effects be positive ones too.

Can too much of a Good Thing be Bad for You?

Can too much of a good thing be bad? This expression can be used in relation to so many things like food or drink or money. But can it be used for attitude or say positivity or inspirational examples in life. We certainly seem to be focusing a lot on being positive, reading quotes that highlight good and positive and indeed inspire us to promote holistic wellbeing. Along with quotes and memes that tell you to be better, be stronger, be smarter, be more thoughtful, be more and more and more of everything. Do not give up, dream bigger and set goals and strive to move onwards and upwards. I, myself, like to see these quotes and put them up in my social media. I choose them very randomly – just what catches my eye and strikes a chord with my mood that day.

However, something always holds me back from putting up too many positive inspirational ones as I feel they are not realistic for some people like me. Let me clarify this point of view. I am chronically ill and have been so from 11 years now. I have connective tissue disease that is autoimmune disease. It is a multi-faceted disease where the body has turned on itself and so there is random inflammation of connective tissues with no pattern or predictability. The disease is insidious and slow to progress and therefore diagnose which took two and half years. While the doctors were doing wait and watch things went downhill. I reached rock bottom when I was unable to even lift my eyelids without excruciating pain.

The way up from that mire of pain, lack of sleep and depression only started when I actually started proper treatment. Oh I had tried all the natural therapies and supplements, acupuncture, gentle exercises, push through the pain and it will all be better therapy, do not lose hope and think positive thoughts to get back into the healthy frame of mind, mind over matter, prayers and so on. I wanted my old life back. I wanted to be able to work and earn as I had since the age of 18. I wanted to go for holidays and complete my PhD. All this also produces stress and has adverse effect on the autoimmune issues.

Once the treatment started I had to get to the stage of acceptance of the reality. Acceptance is a hard won battle and it leads to asking yourself what quality of life is acceptable to you? It is true that some people go into remission but you still have to focus on small goals to reach an acceptable quality of life. I thought this over carefully and even discussed it with my husband and we settled on issues that were important – to be self-caring, able to do the house work, be able to go out to the shops, occasional outings for fun were the goals. The cold weather did not help as for some unknown reason I found it hard to handle the cold I used to enjoy before so warm weather was something I needed. Family issues of illness and deaths added on more stress. A solution we came upon was to move to a warmer place and reduce relationships’ stress by the move. Moving itself is one of the major stressors but for the eventual good outcome I pushed through this upheaval. After the move the next thing was should I work but we decided that not working would be more stress reduction. At the same time my medication was upped and the whole journey to getting stable took another 4 years after diagnosis.

Going back to can too much of a good thing be bad – the acceptance and stability in health was along road and hard fought. I was poodling along nicely helping others and working with them to adapt as this I saw was the way to dealing with long term illness and having self-worth. All of us need to feel valued and wish to contribute to society and I had to find ways of doing so. 

On and off I see write ups about people who have overcome adversity, ill heath, disability and even death bed to achieve goals that would have been almost impossible. While I am happy for people who have done this and would give high praise to survivors of all kinds it suddenly makes you question all the decisions you have taken. Should I have not given up work? Should I have done something different and got into another profession? Am I not a strong person for I appear to have chickened out of the whole upbeat do the best and more to get back to being a ‘productive’ person? Do others perceive me as a quitter? All these ‘good’ ‘positive’ achievement stories have shaken my self-belief that I am doing the best I can. 

Being stable as it is, raises self-doubt about the extent of the illness. I only have to try reducing any of my medications and the symptoms come creeping back telling me remission is not my fate. And still these positive stories make me sad and uncomfortable with myself and yes almost a failure for not being able to be this ‘strong’ person. I guess my cycle to grieving was not over and will never be over as small things can take you back……..to the start… rebuild my self-worth and self-confidence. So YES too much of a good thing – as in positive stories, positive and inspirations quotes and well-meaning advice – is a bad thing for me.

Calming My Pain

Inspired by my friend's words ......

My friend Bart wrote this :

Distraction to help cope with pain: Creating a September afternoon on a lake. Not going to go into every detail here but you create the boat. You feel the texture of the seat. The gentle rocking. The lake holding you up. The surface tension of the water and the coolness underneath. The singing of the birds and bugs. The soft rustle of leaves. The wind with whispers of summer and clarity of fall. You can taste the metal in the air from the seats of the boat along with the brine of the lake. You take these static images, memories and a million more then you start to animate them. For me it's a good technique to help with pain.

When the pain hits you

Retreat into a weird world you do

Pain can be different and off the scale

Unbearable but I still live to tell the tale

So the world you retreat to is in your mind

Helps to relive peaceful memories from your mind

So have some lined

So to self you can be kind

Today’s choice is a September afternoon on a lake

You can take memory and a universe create

A boat is bobbing in the water

Seated in there listening to the lapping of water

Feel the texture of the seat

Gentle rocking of the water you cannot beat

The water cradles the boat

Leaving you happily to float

The birds are chirping and singing

The flies and insects are also buzzing

The sun is gentle as the afternoon advances

Sparkle of light on water slowly fades

The wind with whispers of summer and clarity of fall

The soft rustle of leaves that I clearly recall

The smell of moist earth and fading flowers

Will remain into the small hours

My mind is calm

The memory a soothing balm