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.

Living with GI Allergies – gastrointestinal issues

In my previous blogs I have discussed what is an allergy and also what is it like living with allergies that effect the respiratory system which in the extreme can make you wheeze and unable to breath. Just because you have allergic reaction to substances that you can breathe in, does not mean you will also be allergic to foods you consume. However, the chances of developing food allergies are higher if you already have respiratory allergies. Over the years I have become increasingly allergic to many substances that are in the food chain now-a-days. I am, thus, a nightmare to invite to dinner. I also have been asked how I can manage to live. I have retorted that I do not look like a poster child for malnourishment do I? However, I definitely have made it a point not go to dinner to anyone’s home unless I feel comfortable enough to make my food ‘demands’.

The first time I came out in urticarial rash (itchy raised red bumps) was around the age of 18. I could not understand what had caused this reaction and spent many hours cooling these bumps. They were mostly on my lower legs and I used to sit with them in a bucket of cold water. Just as with breathing issues one has to start by going through all that was consumed to try and identify the allergen. It took a few months but I worked it out that I had this reaction whenever there was a certain dish at dinner. This contained loads of black pepper and tamarind. Once I stopped having it, I did not get the urticarial rash. Strangely, I am neither actually allergic to any kinds of pepper as a spice, nor with tamarind as I can use it to spice food. So the reason for that allergy was never really substantiated.

The next few years the allergens to the respiratory system slowly increased but those related to food stuff did not. While the reaction was not showing up as a GI issue it was caused by the food consumed. But once again the allergies to foods consumed began to emerge. The classic trend was identified after years of experience and gives a picture of progress of severity of the allergy. Initial reaction was of abdominal discomfort, tendency of feeling bloated and a bit of wind or itchy lips or mouth. Then you also started having abdominal cramps. If you did not stop eating the specific food, it progressed to diarrhoea. The diarrhoea occurred quicker and with each subsequent exposure (went from loose stool to fluid stool ) to the food that I was allergic to. Since this is the body’s method of getting rid of harmful substance.

Surprisingly, I have never found vomiting to be a symptom. It appears that vomiting maybe more common symptom of food poisoning, at least for me. I do need to point out here that the progress described above is a picture of what happens when one slowly gets allergic to a particular substance. This is related to the repeated exposure to the allergic food that builds and becomes more sever over each exposure. Conversely, you can have a sever hypersensitivity reaction even with the first exposure to any food substance. I have has the displeasure of suffering such a reaction to having pumpkin. I have actually never liked it and had not eaten it since I was a child. Even then it was not something my mother cooked (thank god).

One day I was invited to dinner by a colleague and they made sure they got down all the items I was allergic to and that it was to be vegetarian dinner. Well they made some pumpkin curry. I felt obliged to try some for how can a grown woman and a dinner guest say I hate that. I had a table spoon of that curry. By the time we finished dinner, I felt bloated. Within half hour my abdomen was really bloated and I actually had to bend backwards to allow my lungs to fill up. Then I started feeling swelling come up my throat and was wheezing in earnest. I had only my inhaler with me and not my antihistamine tablets. Oh what a mistake that was, one I never made again in life. I used my inhaler a few times and just concentrated on my breathing. I kept a posture that would allow maximum lung expansion. My poor hosts, they were having kittens and were white faced thinking they were responsible for my condition. Strange they never asked me back! It took a couple of hours to calm down and I sat till late in their home as getting into the car and driving home in that condition was not a wise course of action. So after that anaphylactic shocked mentioned in the earlier blog, this was my second sever out of the blue reaction. I have had a couple of near brushes like this when I have not been careful.

The approach to identifying the food that acts as an allergen is equally hard as identifying those which produce respiratory allergies. Sometimes it is fairly simple, as if it is something you do not often eat then the reactions leave a much clearer trail to the cause. For example, identifying soya allergy was not too difficult as the symptoms came every time I had Chinese food. I used to enjoy it but did not have it very often. The one ingredient that we do not use in Indian cooking was soy sauce and is the main spice in Chinese cooking. I specifically cooked with all things I normally eat at home by making a stir fry and added soy sauce the first time. The second time, I did not use soy sauce. The difference was evident right away. So that was the first thing to be removed from my diet.

Subsequently I have got allergic to mushrooms, pumpkins, melons, squashes, cooked bell peppers, cauliflowers, lettuce, pumpkin seeds, goji berries and kiwi fruit. I found that in UK I could not eat bananas as it immediately caused a severe itch around my mouth and throat. Yet I could eat them when I went away on holiday. The only thing I can assume is that mostly bananas are imported into UK unripened. Then chemicals are used to ripen them and that is what I am allergic to. One would think that the spray would be only on the skin and without that it would be all right. But if I am reacting to the banana it must mean that the chemical is somehow absorbed into the fruit. I used to try a grape in the shop and if my mouth itched I would not buy it so again I link it to any chemical sprays used in growing the grapes. I also found it hard to eat apples, pears and other soft fruits hard to eat without a good washing in running water. I am a lot better at eating fruit now in Australia but I will not try the melons or kiwi fruit.

I was brought up as a child on vegetable oil / peanut oil as well as ghee (clarified butter). But I found over time if I had ghee I got the GI symptoms. I had to stop having any of the margarines as they started adding soy lecithin. I started using olive oil and that has been suitable. Indeed using the olive oil margarine is fine as it does not have soy added in it. I have had sever reaction and asthmatic attack with rapeseed oil (oh I am allergic even to the rapeseed pollen), grape seed oil, canola oil and palm oil.

Well the best tip I can give to finding out what your particular poison is by keeping a daily dairy of what you are consuming. If you have made it yourself it is easier but if you are having processed foods, takeaways, eating out often it becomes harder to identify what is being consumed. The processed foods have such long labels and words which are hard to decipher. The labelling laws are different in different countries so again they may or may not have all the ingredients listed. The additives often get written as E numbers and of course we do not keep all those numbers in our heads. I find it easiest to read the label for every product every single time (even if I buy is regularly) for any familiar allergens. I advise everyone should do the same, as once or twice I have been caught out when the manufacturers have changed the ingredients. For example, I used to have a particular brand of bread, it was healthy and not the white plastic bread. I had it for years and suddenly one day I started feeling bloated. I could not understand why as I was not eating anything different. While shopping I by chance picked up the bread and read the label……Oh my!!!! It had soya flour added as flour enhancer. I went through the whole bread aisle and found all had soya flour.

So keeping a diary will help to eliminate by trial and error. It is a slow process and if you can get medical assistance to find the allergens it would be helpful. Also form a habit of reading every single label of every single food you buy every single time before you buy. Tedious you may think but it becomes a habit soon enough. As for eating out well its hard I admit it. I try out restaurants and ask if they will cater to my needs. Most often I can get away with Indian places (the only worry being the use of different oils and ghee). However, I hear that now in India as well they are adding soy as a flour enhancer. I can have Italian as I can avoid my allergens fairly well and yes they have not started enhancing their flour with soy so pasta and pizzas are a safe bet. Similarly I can have some Mexican dishes. Some restaurants are good and will even get the chef out to talk to me and organise my meal around my allergies. Once you find these good suitable eateries stick with them.

I also always keep handy some antihistamine in my purse and of course I would keep my inhaler too when I was bad with respiratory symptoms. It is best to take then as soon as you find out you have eaten something by mistake or first symptoms makes its appearance. I have often heard people say oh you allergy is not so bad, have it and eat your antihistamine. This is dangerous and I cannot emphasis that enough, for the reaction gets stronger  and lasts longer every time you eat the food you are allergic to, just as I pointed out with respiratory allergies. The bottom line as I see it – it will kill me and then it is not so hard to let go of the foods most loved. Good luck to all of you who have food allergies.

Living with Respiratory Allergies – Breathing issues

Living with allergies can both be easy and hard. It is hard when you cannot find what you are allergic to, what you cannot avoid and what then you come in contact often. Also it is hard when medication cannot fully control the allergic reactions. It is easy to live with when you can find out what it is you are allergic to and can avoid it easily, when you only come in contact with the allergen by accident and when medication works immediately to fully control the symptoms. 

I explained in my earlier blog (Allergy - What is it?) that when the body recognised any substance as foreign it causes a reaction in the body to get rid of that substance. This is a reaction we want when the invading substance is harmful like a bacteria or virus. However, if this reaction occurs when we come in contact with what are considered harmless substances, we call it an allergy. Over the years more and more people have become allergic to more and more substances. I am not sure what it says about our life styles and our food and use of chemical in daily life. 

My first encounter with allergy was seeing my mother come out in urticaria (raised red bumps that itch a lot) upon eating a Gujarati dish called patra (made with taro leaves and besan / chickpea flour). I do believe she used to react a bit to the sourness of tamarind. But I was little and did not really understand except that she was given a tablet (Foristal) which was a common antihistamine in those days in India. 

At 18 I started a nursing degree and bed making, cleaning and dusting was part of the care (unlike now when we have auxiliary workers or aides). I noticed towards the end of the first year I used to start sneezing at soon as I started dusting. My nose was itchy and it was just annoying. It is very difficult to avoid dust, especially if you live in a country like India and with a job like mine.

I used to react with breathless feeling when I used any talc or facial powder and so I by the time I reached adulthood I had given up using that totally. I also noticed that I would react badly to some perfumes used by my friends and colleagues. I had to leave the area very quickly as I would sneeze non-stop. This allergy progressed to a point where I could not use any perfume, deodorant, any sprays for body or hair. I could actually taste it in the back of my throat and it made me feel ill and wheeze. The dust allergy used to constantly irritate the mucous membranes of my eyes, nose and throat and I was having repeated infections – tonsillitis, pharyngitis, laryngitis, bronchitis – generally needing about 3 or 4 rounds of antibiotics each year. 

I visited an allergist and decided to find out exactly what all I was allergic to. Well that turned even my allergist’s hair grey in a second as she conducted the tests. Dust being the already known allergen she carried out that test last. Just to let you that generally very dilute forms of the allergen are injected just under the skin and if you are allergic then that injection site will become a red raised weal. The size of the weal is indicative of how allergic you are. Thus a few days later the allergist will measure the size of the weals. This showed that there were about 7 different pollens that I was allergic to. Now coming to dust, which was left to the last, caused me to collapse even before the doctor has put the needle away. This is what is called an anaphylactic shock. I needed immediate resuscitation.

In relation to this severe allergy I tried going through desensitisation therapy but had to abandon it as even the extremely low dilution was causing difficulty and then my allergist moved away.

Around this time I also moved to UK and the change in the environment and the lower levels of dust made a big difference and I felt so much happier not having to wheeze or get repeated infections. A year went by peacefully and then wham hay fever hit me. By this time I was getting allergic to cosmetics like lipstick and mascara which caused the skin to peel and eyelashes to fall off. That got removed from my daily life fast. With hay fever I was taking antihistamine daily. The season started with the first cherry blossoms and ended when the grass died out at the end of summer. 

Fortunately, I used central heating appropriately so there were no mould issues as they also send me into a wheeze and tight chest. I found about that allergen when I stayed at some crappy hotel which had mouldy pillows and mattress. I had 3 showers and washed my hair before I realised what exactly was causing the problem. Needless to say I got no sleep and had antihistamine and inhaler a few times. During summer, life got adapted to be indoors more, keep windows closed and use a fan to keep the room cool and also I got an ioniser for my bedroom. They use very little energy and keeps the room free from dust motes. 

Cleaning was also something I had to think about. When we had the old hoover with dust bags I was unable to clean the carpets as it tended to send up dust particles in the air as soon as the bag was partly filled. It fell to my husband to do the hoovering. However, when we got the new bag less one I had no problems as the dust was always sucked in rather than spread around. Any dusting had to be done with a damp cloth so as not to raise and spread the dust about.

Also it becomes important to use the hoover on the mattress and also sofas and chairs covered with cloth to remove dust. I also found that I could not use down filled pillows and had to buy the hypo allergic ones. Since more people are aware and more products with regards to mattresses, mattress covers and pillows are made for people with dust allergies. I also changed my open cabinets for knickknacks to closed ones so as to avoid the dust gathering and the need to dust it often. 

My sister also used to get hay fever but was mainly related to grass pollen. She used homeopathic pills and they helped her. Whereas, that remedy did not make any difference for me. Then one day I saw a poster for massage at my local beauticians. So I made an appointment and during the session I found out that she was an aroma therapist. She agreed to use specially mixed oils to help my breathing issues due to allergy. I used to have a full body massage with the oil every fortnight. The effect was good. Sadly she stopped coming to the local place and it was hard to go to where she has moved her practice. However, I actually used to buy the mixed oils from her. Finally that was getting very expensive and I started buying and mixing my own oils. After a shower I applied the oil all over my body and massaged it in gently. After about 6 years I found that I no longer reacted to hay fever and actually did not need to use my inhaler either. These days I keep handy a bottle of cypress oil (which was one of the oils in the mix and works best for me) and use a drop should I feel that familiar twitching of the nose and sneezing starting.

So going from, when grass ha to be mowed at least a week before my visit to family who had gardens, I now have a garden and mow my own grass. I used to avoid going to park but now try regularly to have a walk around the park and see the changing seasons in nature. I find it a good exercise as well as relaxation method to see the flora and fauna.

The allergy caused by the perfumes and deodorants are harder to avoid as practically everyone uses them. I actually hold my breath or a tissue over my nose when I have to pass through the cosmetic section of any departmental stores. Sometimes you pass someone on the road and they have so much sprayed on that you can taste it. It annoys me often but unless someone suffers they have no idea what it is to live with this kind of allergy and so cannot show compassion. I had to always warn people when they were coming to see me and expected my office door to be shut for privacy or even in the classroom that I did not want people to wear any perfumes. Those who wore some sat by an open window generally. So you see some allergies can be managed better than others. 

Hope this helped those of you who have allergies that manifest in respiratory symptoms. I will tackle the food allergies in the next blog so as to keep the reading in discrete chunks.

A Little Rash

The day was bright and sunny

I was thinking about writing something funny

The radio is on online

The songs I sing along with are fine

Messing about on Facebook

While reading from my e-book

The discussion in my group was all about rash

All the - since when, where, how much itchy was this rash?

What came up on Google when one looked for rash?

What can one do to get your mind off the rash?

It itched so bad that I could have clawed my skin off

As there are big red patches of skin all rough

Even as I refrained from itching

Vision came to mind of monkeys scratching

The lotions and potions that I applied

Cortisone cream will help they lied

The pharmacy cashier stared in surprise

As I lathered on the cream even before I paid the price

Instead of calming the itch and the angry rash

The little nerve endings increased their lash

The weather was cooling and I felt cold

But the itch would not let any sleeves be unrolled

So started the pill popping

Anti-Inflammatories and antihistamines in my system bopping

Off with this cream

On with another oil and cream

This time I was sure my doctor would have evidence

Active rash would back my verbal history with evidence

Then I had a bright idea to dab pure tea tree oil

The itchy waters were calmed with the pouring of oil

Now I have just a few odd reddish spots

Larges patches were now but little dots

My rash has calmed down just in time

To make me a liar for doctor’s appointment time

Typical when your body plays these tricks

They stick in your health’s fabric like little pricks

Now the only cure is to put that cream back

And get that itchy rash angrily back!

Body Rhythms

So my body feels like a musical instrument shop

However this is not an organised op

Tummy can rumble like a base drum

Or like the sitar being strum

The wind can grumble away

Like a brook bubbling on its way

The odd muscle flutters gently

Akin to breeze shifting sand finely

Then the spine creaked when I turned

A crackle of large joints is like piano badly tuned

While small ones just snap like a rifle shot

Making others jump a lot

The rash itches and I scratch like mad

Sounds like using a rasp that is bad

Pain in the muscles and bones can throb

Often this drumming my breath does rob

The prickling of the eye like a triangle struck

By all the Duracell bunnies in the truck

Headaches that feel like a constant drumming

Ears that make their own buzzing

I am sure the rest of the organs in the shop

Would like to and might join in this op

I am my own musical shop from midnight to noon

But I am damned if I can change the music anytime soon