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Five of the Hardest “pills” to swallow when diagnosed with a chronic condition

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I saw the above picture floating around facebook this week and realized how true these statements are.

Five of the hardest “pills” to swallow in regards to chronic illnesses:

1. Giving up your career. Most people who get diagnosed with chronic conditions often have to face the dilemma of continuing to work or giving up their career or job they are employed in. No matter what job path you follow, the road can become difficult when you factor in a chronic condition like fibromyalgia. Fibromyalgia is very unpredictable and varies day to day. While battling the intense pain, extreme fatigue and any other symptoms that arise, punctuality at a job dwindles. Did you know the pain chronic pain sufferers feel would send people without pain conditions to the hospital seeking relief?!? If I went to the hospital every time I had pain, I would live there because the pain never really goes away. Most people will continue to work for as long as they can to avoid financial burdens. Let’s face it, cost of living is getting expensive and continues to rise every day. Others may not have the opportunity to even consider limiting work hours or ceasing work completely – so they carry on ignoring the pain and other symptoms the best they can. Everyone’s situation will be different, and each and every one of us will have to make the best choice for our circumstances. There are a lot of aspects to consider before making your choice. Writing a pro and con list may help you make your decision. In a study it showed that working can improve one’s overall health and well-being, along with decreased fatigue and pain levels. I’m not so sure I agree with this study, as I found the complete opposite. Maybe for some people fibromyalgia is milder and not so disabling, but for myself I felt I could not continue to work due to the unpredictability and forever changing symptoms that rear their ugly heads. Working as an educational assistant in schools with children with developmental challenges became too overwhelming and demanding that I remained off of work.

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2. There is no cure for your illness. Before I got my solid diagnosis, I yearned to know what was wrong with me. All the unexplained symptoms were very mentally and physically draining. When I finally got told it was fibromyalgia, I was happy to have a diagnosis, but finding out there is no cure is a slap in the face. It usually takes a long time period before one is diagnosed with fibromyalgia, leaving that person trying to manage the symptoms until then. We learn how quickly fibromyalgia can alter life – then to be told there is no cure is difficult to absorb. You wonder how you will survive the rest of your life in pain and start to wonder if you have the strength to do so- somehow you manage to find the courage to get through each day. It can be overwhelming to think about trying to manage a condition the rest of your life that is forever changing. Day by day! That is my best advice. I find looking too far ahead is overwhelming and the anxiety begins to set in. I learn to wake up each morning and gage what my day may look like. If I wake up feeling not well and in pain my day is low key.

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3. Losing friendships/relationships

Sadly, chronic pain conditions can put a strain on one’s friendships and relationships. When one is diagnosed with a chronic condition their capabilities alter daily. Friends I once had connections with, I know longer do because of the limitations fibromyalgia creates. I find myself scared to make plans, because I never know how I will feel. Family and friends may not understand why you avoid going out with them – I try to be honest and make sure they know it is for this reason and I am not avoiding them personally. Your once shared hobbies/activities may soon not be able to be your hobbies anymore due to your condition. For example, you may have joined a sports team such as pickleball or badminton but had to give it up due to high pain levels. You soon lose connection with the other team members because you no longer have anything in common. Fibromyalgia can also strain marriages. A study conducted by the Mayo Clinic reported the following: 1. One out of four felt that his or her spouse didn’t understand fibromyalgia. 2. One out of ten people reported fibromyalgia helped lead to a breakup. I’m lucky in this aspect. My boyfriend is very understanding and supportive.

Chronic pain sufferers will also isolate themselves socially. I know I have. Going out or to visit people can become exhausting. I’m always hesitant to go too far from home because I’m scared the pain or fatigue will go out of control (which happens often). To those reading this who do not have fibromyalgia, I want you to know we do want to engage but dealing with chronic pain makes it difficult. The friends who still message, stop by for visits and understand why we cancel plans spontaneously – thank you!

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4. Yearning to do things your body no longer allows. After being diagnosed with fibromyalgia, my entire life changed. Pain and fatigue put a major damper on how one used to live their life. I miss being spontaneous and taking random road trips just because I could. Now road trips have to be planned carefully and around how I feel. I’ve had to learn to let hobbies go and learn to love new hobbies. I used to love to walk long trails and hike, now if I push myself to do these activities, I know I will be bed ridden for days to come. I’m slowly learning I have to be ok with driving around to look at the sceneries more than hike through them. I used to read a novel a week. I’ve had to learn to love audiobooks, because I can’t concentrate enough to read the sentences to myself. I even tried other activities such as paint by numbers, diamond painting and began puzzles again. What do you miss?!

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5. Accepting you are chronically ill. This is one of the hardest things to do. If you have not read my blog on the grief cycle, please do! Acceptance is the last step in the cycle – a very difficult step at that. Lots of people never really learn to accept being chronically ill. we just learn to be ok with it as life carries on. It took me almost three years to accept my condition and not be so angry all the time. There is no time frame to accepting your reality – of being chronically ill!

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Do People Grieve when Diagnosed with Chronic Conditions?

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When anyone is diagnosed with fibromyalgia, I feel as if that person grieves who they once were and have to come to accept who they have become. Fibromyalgia alters a person’s life so drastically. Every area of your life is usually impacted to some degree. It took me awhile to realize this. Whether it is a minor change or enormous change, people with fibromyalgia have to learn to live with chronic pain being present in their everyday lives. One of the hardest things to do is to accept and be okay with your diagnosis. At least for me, I felt I was in denial for the longest time. On my good days I often thought to myself, “Awesome I’m better and I can return back to my life before fibromyalgia took a front seat.” When the good day starts to fade into the background and the pain begins to slowly creep back in, emotions can run high and spiral all over the place.

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Have you ever heard of the grief cycle? I first learned about the stages of grief when I was enrolled in a psychology course – training to become a mental health rehabilitation worker. When people close to us, pass away and we are grieving the loss, our emotions tend to be all over the place – one minute you are happy, the next sad, or anger sets in. It got thinking, this grief cycle can also be applied to those who live with a chronic condition such as fibromyalgia. No matter what a person is grieving, there can be five different stages of grief that you may go through. I know some grief models discuss seven stages, but in my blog, I will be referring to the 5 stages of grief model. Not everyone will follow these stages in the same order, nor go through each stage. One can also be in a stage and revert back to the previous stage. We all are equipped with different coping mechanisms and grief will affect each and every one of us differently!!

In my own fibromyalgia journey in the last three years, I know I have been in stages of grief and returned several times to different stages. Just like the above picture, my road looked like the image on the right side. I still find myself having mixed emotions – and I dont think that will ever stop. Having fibromyalgia is like being on a rollercoaster- ups and downs. I go back and forth between the different stages, even though I have accepted that my life will look differently then before diagnosis.

Denial – When I first got diagnosed I was shocked with the diagnosis of fibromyalgia. I had a doctor tell me years ago (2014 ish) that he suspected I had fibromyalgia then. I shrugged it off and never thought about it again. Back to 2019…I initially went to the doctor because I was always tired – which soon became apparent that it was fatigue not just tiredness. My hands and elbows were always in constant pain too. The initial action of any doctor is to probably run blood work. Mine kept coming back normal. As the pain got worse over a short period of time, my doctor diagnose me with fibromyalgia as there was no other explanation. I took some time off of work to try to get the symptoms under control. I convinced myself that the migrating pain and the deep down to the bone wrenching aches would just go away and I’d be back to work the following week. I even found myself thinking to myself, “I’m just over thinking things, the pain isn’t really there.” I even tried to convince myself that it was just a bad flu bug, even after diagnosis. I took longer off work, thinking I could heal my fibromyalgia – what I didn’t realize at the time was there no cure to fibromyalgia, only learning how to manage symptoms and learn to accept a new way of living. My medical leave from work, turned into months, a year and so on. It took me close to three years to accept my diagnosis. There are still days where I wonder if something is still undiagnosed and it really isnt fibromyalgia. For now, I carry on with life as if it is fibromyalgia and do the best, I can do every day. Some days I make it from the bed to the couch and that’s ok!!

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I often find myself back to this stage. Fibromyalgia takes so much away from a person. I have learned we often take things for granted. A task such as brushing your teeth, walking up a set of stairs or even getting out of bed every morning can become so daunting – especially when you have chronic pain involved. If I do push myself to go out and do something it results in a full-blown fibro flare. Then I find myself angry with myself for pushing too hard. I know my limits, but some days, in order to enjoy life, one has to endure the pain. I find myself being angry because I don’t have the energy to go for a coffee with a friend, a birthday celebration or even a vacation away. Fibromyalgia has taken away from me being able to take part in all my favorite hobbies such as hiking or playing golf. I’ve had to learn to enjoy new hobbies – which some days means binge watching a favorite tv show on Netflix to pass the day in pain. I used to read a book a week, now I can’t get through a book at all. My new hobby is to listen to an audiobook instead.

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Research often reports that depression is high for those who get diagnosed with a chronic condition. How can one not become depressed when they have lost so much independence and enjoyment? For the most part, humans are very sociable, but for those who are dealing with chronic pain and fatigue, your social life soon takes a backseat. I have had to cancel plans so many times, due to the fact that I just don’t feel good enough to leave the house. It becomes very frustrating, and one can start to feel depressed from having to isolate themselves due to high pain levels. I’ve become horrible at keeping in touch with friends and family since I have been diagnosed. As of late, I try to at least text people to say hi. I never hit a full depression stage, but I would definitely say I was “down in the dumps.” I did seem to develop major anxiety which can also contribute to depressive states. I don’t have any words of wisdom for this stage, because I’m still struggling with this stage myself. I’m currently trying to live in the now and not worry about what I can’t control in regard to my fibromyalgia. I’ve learned my fibromyalgia symptoms do what they want when they want, and I can’t prevent them. I have to deal with it when it happens. I often feel overwhelmed by the endless symptoms that appear everyday with no warning. I’ve learned its ok to be angry!! Just like the saying says, “It’s okay to have bad days, just don’t unpack there!!”

At this stage, one often thinks if I take specific steps the chronic pain will disappear. I had it in my mind that if I increased my exercise and went swimming, I would get better, or if I go for more walks the pain will disappear. Boy was I wrong. Not only did it increase my pain levels, i created false hope of fixing myself. Don’t get me wrong, exercise is important, but in my specific case, adding exercise was not the simple answer. I attended a pain clinic with high hopes they could fix me. Even though I knew there was no cure for fibromyalgia, I thought specific actions would make it go away and my life return back to normal! I often would think to myself, if only I had listened to the doctor back in 2014 maybe I could have avoided being in so much pain today. Stop beating yourself up!! We are often too hard on ourselves.

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Acceptance. This is the last stage. This is where one learns to be okay with the diagnosis of fibromyalgia. We have to learn how to live with a chronic condition and make changes to our lives to be able to function. It is not an easy task to learn to accept – that your life that once was, will never exist again. You have to learn to live and navigate a whole new world – the life living with chronic pain, fatigue and other symptoms that may rear their ugliness. Acceptance can be easier for some, while others may need longer to accept the reality of the situation. It took me almost three years to accept mine. Remember, there is no time frame to acceptance.

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