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Guest Post: Making The Most of Chronic Illness by Sarah Downing

Sarah Downing has had a special place in my thyroid journey from the start.  When I was first diagnosed, I combed the internet looking for connection.  I found Sarah’s blog Butterflies & Phoenixes, which was full of positivity and the thing I needed the most – HOPE.  Later in my journey, Sarah connected me with a group of wonderful women near me through the ThyroidChange mentoring program. She then brought me into the fold as a fellow volunteer.  I am grateful for Sarah’s friendship, for the incredible work she does as the ThyroidChange blog coordinator and for this guest post.

 sarah (3)When we’re first confronted with that dreadful realization that we have been diagnosed with a chronic illness and that chronic means we will have to deal with it for the rest of our lives, our initial reactions are often shock, fear, sadness and anger. Many people feel as if they are being punished and might ask “why me?” Such reactions are normal and are usually followed by the acceptance that everything has changed. However, such changes don’t necessarily have to be for the worse. A diagnosis may require us to reevaluate and reprioritize our lives and do things differently that have up to now been the norm for us. This article is based on my conversations with various chronic illness sufferers, as well as my own experiences.

Acceptance of our condition and our emotions triggered by this is healthy and necessary in order for us to move forward. However, this doesn’t mean that we have to accept defeat. As one lovely lady put it: “When dealing with chronic illness you have to look at things differently. For instance, recovery takes on a different meaning: before chronic illness it means cure to most people; after chronic illness it means not giving up and living the best you can with the illness you are dealt.” It is the aim of this article to help you do precisely that.

I suggest we start off by spending quality time with our friends and families whenever we have the opportunity. With the decline in our energy levels, the time we spend with those we care about becomes even more precious. Even more reason, therefore, to surround ourselves with people who care about us too and who understand or at least make a conscious effort to understand what we are experiencing. Those who truly care will love and accept us for who we are irrespective of our state of health. However, if we expect them to do that, we must first learn to love ourselves and treat our bodies with respect. Illness frequently makes people feel physically flawed and inferior to those who have lucked out in the health lottery, but this is simply not the case.

When you are battling with your health, it is vital to start listening to your body, as certain symptoms are its form of communicating what it needs from us – for instance, if we are tired, this means we need to rest. We are always telling others to give themselves a break, but so rarely do we follow our own advice. You may well have to slow down for the sake of your healing process and your stress levels, but this is nothing to be ashamed of and, in fact, by doing so you are taking a responsible step towards getting well. Furthermore, many chronic illness sufferers have reported that this imposed slow-down has enabled them to appreciate life more by taking things at a more leisurely pace. When you are chronically ill, it is important to take each day at a time without fretting about what has happened in the past or what will come in the future.

It’s not a crime to admit we need help and there are several sources that can provide it. The first tip I’d like to give you is based on my own experience: delegate tasks where you can and where you need to. For years, we have had a cleaning lady, as we never have the energy to clean our apartment on a regular basis. Due in part to my lack of energy, I spend lots of time at home, so living in a clean and tidy environment makes it feel more comfortable to me. From talking to others, I realize that cleaning rates vary greatly depending on where you live and also that many people consider hiring a cleaning person to be a “guilty luxury.” Well, anything that makes your life easier is something you should embrace when your energy is flagging. As for the financial side, another lady suggested that cutting down on non-necessities, such as eating out, might help you put aside the necessary money you need to pay a cleaning person to come in several times a month. Alternatively, she told me of a scheme where several of her friends banded together and met up once a week at one of the group’s houses for a team decluttering effort. When it comes to cleaning, many hands really do make light work, so I could imagine this being very effective if you can find a group of friends who would like to do this. An added plus is that you get to meet up with your friends on a set date and are able to socialize while doing something productive. The friends had a similar scheme for cooking – they would cook meals together in bulk, so that each of them had enough to freeze for times when they were too pooped out to cook, but didn’t want to spend money on the (frequently unhealthy) delivery options.

For many, being ill feels as if we have been robbed of control of our lives. There are ways to regain this control by taking an active part in your own healing process. This means finding the right doctor for you. You are paying your doctor to make you well (or at least as well as possible), so you shouldn’t settle for someone who is rude, unknowledgeable or doesn’t listen. You deserve the best doctor your insurance will pay for, so don’t shy away from switching doctors if you feel your current doctor isn’t the right one for you. We can also be proactive by doing our own research. There are so many good thyroid resources out there and the more we learn, the more we can work together with our doctors as partners in finding the right treatment.

Not only does the Internet offer a wealth of resources, but thanks to online communication there is now also a plethora of online support communities. One lady describes this phenomenon as follows: “I know that by reading about others who manage to survive every day that they conquer the illness we all have and there is a place we can all come to and talk, learn, rant and sing praise to, that there isn’t anything I can’t do, and when I have trouble, I can come there and read, interact, and find ways to cope … this has been such a blessing and lifesaver for me.” In turn, many people find it rather cathartic to put pen to paper and write down their own health struggles in the form of blogs.

One thing I have noticed in my advocacy work is that an incredible amount of thyroid patients seem to have pets. Perhaps this is no coincidence because many people feel that pets understand us better than our fellow humans and I know from my own experience with our orange tabby Biscuit that they can be incredibly empathic and supportive just when you need them the most, which is highly beneficial when you are chronically ill. I’ve even heard of scientific studies claiming that owning a pet can improve your health. When she needs a cuddle, Biscuit will jump up on to the bed, announce her presence with her characteristic meow and purr in my ear whilst cutely dribbling. No doubt about it: welcoming our golden kitten into our family has truly changed our lives. The two kittens who came later, Ember and Teddy, have been equally therapeutic, but Biscuit and I share a special bond.

One thing we must not forget when we are ill is to take the time to do the things that we enjoy. In my case, singing is something I am passionate about and so when I sing it is liberating and makes me forget about a lot of the bad stuff. I love getting behind a microphone and singing karaoke. It makes me feel attractive even though there are days when your thyroid can make you feel downright ugly. In some ways, being diagnosed has changed my life for the better. Since my diagnosis, I have learned a ton about medicine and am finding it very fascinating. In addition, I have been given the opportunity to blog and do advocacy work and thus help both myself and others. In this way, I can learn about my disease, how to cope with it and to face up to the fact that I have it. Furthermore, it makes me realize that there are things I can do to make my life better. I’ve been truly blessed by the lovely friends I have met through my illness and I couldn’t ask for a more supportive bunch of people. For many people, chronic illness changes us for the better by making us more compassionate and understanding of others who are going through suffering.

One lady credits her sanity to “living in the moment” techniques such as meditation (diaphragmatic breathing or yoga breathing), arts and crafts and puzzles. She’s recently started treating herself to massages. When our bodies are not feeling as well as they should, any kind of physical pampering such as massages, pedicures or manicures can really cheer you up and relax you. She goes on to explain that “doing your passion is sooo fulfilling and so good for your spirit. It’s what keeps us going. So many of us have been robbed from doing what we are passionate about. Creating and digging in the dirt are my two passions, both of which I have not done in so long because of just trying to keep up with work and not having more energy or focus to do anything else. I’ve learned that that has been such a mistake. I think doing what we love is also healing for us.” Another lady I know is a passionate and talented photographer and she once told me: “I have so much fun … if I’m in a bad mood I’ll take out the camera and I’m instantly in a better mood!”

Now that you’ve read my article, I’d love to know from you whether thyroid disease has changed your life for the better in any way and what your own personal coping strategies are. Looking forward to hearing your experiences!

In love and healing,

Sarah

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