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.