The diary has always enamoured me. Perhaps it’s the empty lined pages, perhaps it’s the book itself, I have never been clear as to the exact fascination. Come to think of it I was rather fond of the diary’s lock and key, what child wouldn’t be excited to have their own secret place for thoughts? One time I found my fathers diary from his childhood, although he didn’t write in it often there was one remarkable entry. This was found after my fathers passing so we were never able to dialog with him about the event. Dated 1948 he wrote a short and sweet entry, being that he took Audrey his neighbour to the movie theatre on Mt. Pleasant to see a showing of a film. When he reached over to kiss her on the cheek, likely with much hesitation, she would have no part of it. I can just picture it and it must have been emotive as it made it into his diary. It would seem fitting to write about what I am experiencing currently, like a diary entry of words speaking the truth with no exceptions.
How to Seasonal Temperature Changes Effect Fibromyalgia
Living in a Northern Hemisphere continent and being fond of the extremes of seasons, I love elements of each season equally and truly look forward to the weather the seasons bring with them. However, now living with Global Fibromyalgia the change in seasons now comes with some considerable suffering. With each transition in temperatures no matter whether it is cold to warm or vice versa, my body has significant challenges adapting. This is common with chronic illnesses such as Myalgic Encephalomyelitis and Fibromyalgia. It is also common that ones own person has great difficulty regulating their own body temperature, particularly early on in diagnosis. This is my experience at the current time and I thought it would be good to share with others who may be having similar experiences with seasonal changes. Whether you are aware of what is happening to you or unaware this piece has something for everyone suffering with a Fibromyalgia flare.
First off, I will tell you this happens to many of us. It would appear that our perfect temperature to function at our best ability at a degree of 21.1 C / 70 F. I would agree with this whole heartedly, this is my best temperature for functioning ability and I try to keep my home this temperature during all seasons. Having said that most of us don’t live in a climate that provides a consistent temperature and thus we need some strategies for living. The best strategy is to accept ones limitation, respect it and learn how to live your best life. I am going to have a Fibromyalgia flare when the seasons change because my body doesn’t have the ability to easily adapt to the temperature change and requires time for this adjustment. Each of us are our own individual person and we all have our own reactions.
Tips For Daily Living
My top tip is to only wear breathable fabrics such as linen, merino wool, hemp and organic cottons. These fabrics are an absolute life saver and came to me as a recommendation from my specialist. By choosing organic breathable under garments including socks, I set myself up for even better success, choose for comfort not sexiness ladies. Frankly, when I feel like I’ve been run over by a dump truck I am not much in the mood for sexy. In fact, I don’t want to be touched at all when I am suffering with severe pain and aching. Brandon is just beginning to touch me now, it has been over 3 years. I had a specialist ask me why my eyes were closed when they were diagnosing me, I explained that it overstimulates me and hurts me to be touched anywhere.
As for the bra, here is the truth. I have a bust and I choose a bra for comfort. Most bras are not made for comfort, they are made for your breasts to remain perky like a fit and fresh young girl. I wonder have you ever thought about that ? Woman don’t come with an expiry date although the male world seems to think so. The bra you choose will not likely be what you ever would have picked before, they don’t come in lace and fancy colours. Frankly you are looking for a demi-bra or a loose fitting sports bra style. My bras are organic cotton and hemp that are breathable. My hemp bra is a loose fit with comfortable straps not too thick or thin and I wear this when I have pain. It doesn’t do much other than hold my breasts in place and prevent nipple visibility. The organic cotton bra is a demi-bra fit with slightly more support and I can wear this when I am experiencing less pain. A tank with built in support made in organic cotton that is breathable and to give you some support and prevent nipple visibility will work fine. The truth is on severe pain days I may get a tank top on with thick straps and that is it, more likely I wear my pyjamas, the pain is so bad who cares anyway!
Along with the breathable fabrics, I always dress in layers. There isn’t a day when you will see me without a neck scarf. This is wonderful for me because I have scarves in all colours and patterns of the rainbow, scarves are one of my signature fashion style elements. Scarves and socks match on most days, this is left over from my retail days working downtown in clothing stores. In all seasons I have a scarf to cover my wind gate as it is my chest and lungs are my weakest point on my body, I rarely let the cold in. A scarf can be used as a shawl should you feel draft through your shoulders and you need to cover up. I have even used on as a head covering from the sun on hot days. Having a variety of cardigan type sweaters both long and short is excellent for an extra layer of warmth, having a variety of colours and patterns makes layering fun. When you are housebound dressing in colour is one of the most exciting parts to the day, not to mention great for the spirit.
When Reality Hits As A Flare
Now the truth is you can do all of this and it helps on all days. However, when the seasons change I must accept my limitations. My body will ache so badly it will force me to stop, and stop I must. If you have ME and you push through the Fibromyalgia pain you will push yourself in PEM or even worse an ME flare after you have a Fibromyalgia flare. Now you are talking about weeks/months of suffering rather than a few days. When my body says stop, then STOP.
I immediately go on rest. This means sweats with layers and warm socks, on my chaise with feet up, my heavy blanket or a weighted blanket, the least movements possible and playing Mary Tyler Moore episodes on Apple TV. A hands down no thought needed favourite program which is light and fun is mandatory with chronic illness and disability. As for treatments for pain, do them all and don’t relent. A wise woman once gave me wisdom on the topic of pain. You know what it feels like, you know you are experiencing it and you know why you have it. You don’t need to suffer through it. Treat your pain. If you can have someone run you a hot epsom salt bath, hydrate well afterwards and start from there. We had to have a bathtub reinstalled in our bathroom for soaking my muscles in epsom salt as it is one of my most useful all time preventative tools. I haven’t talked about pain management very often but it is part of my daily routine and lifestyle, as it is necessary when you live with chronic pain.
My tips are many. Firstly, dress for the weather in layers during seasonal transition which I said before, it’s important to regulate your internal body temperature. If I can manage my internal temperature I can often manage the external temperature as well. If I’m hot, I remove a layer, put up my hair up off my neck, take off my socks and sit while I regulate. Have a drink of water close by to hydrate, do this even when I am on rest. Hydration is very important and I often use electrolytes when I am aching badly or a Calcium Magnesium drink.
Secondly, my specialist gave me a pain protocol which keeps me balanced most days. Continue to do this and then add to it. My specialist has instructed me to use CBD oil for pain and I do. In fact, when pain is bad and Brandon liberally slathers CBD oil on my aching areas I can experience some relief rather quickly. I also feel a nice relaxation in my central nervous system which is always a welcome change. I accompany this with pain relievers, I have food allergies or intolerance and learned I needed to check the ingredients as many have soy and gluten causing allergic reaction on top of a Fibromyalgia flare.
Heat is my best friend and will keep me company during a flare. I use a neck and shoulders sunbeam heating pad daily for pain and have been known to use it for hours with severe pain. I have one on every floor and it is my most effective tool for pain. I also have an infra red heater which I put on my areas of pain regularly for 15 minute intervals in the winter months. In the warmer months I take myself outside to sit in the direct sun with a focus on my neck and shoulders for 15 to 20 minutes. This also helps with Vitamin D deficiency which most of us experience. When I am functioning within my normalcy the sun replaces my heating pad and infra red for during the warmer months. However, be careful as humidity, summer heat and air conditioning can bring on a Fibromyalgia flare so you must learn your limitations. There is a finite balance with everything in my life, that is ever changing and unreliable, my body controls me.
This week has been a Mary Tyler Moore week while stretched out under a blanket on my chaise with Dolores and Fionny by my side. My heating pad has been my third best friend and I just refilled my supply of CBD oil for when my next Fibromyalgia flare hits. I feel good about my treatments and have worked hard not to bring on ME, PEM or a flare. I should be feeling more balanced with pain in a few days and will enjoy spring changes my in English Garden that the season has brought in. Take care of yourself always, you know best. Always advocate for yourself, never accept less. Most of all never put yourself in a position that will worsen your condition because someone asks you to do something harmful out of ignorance and disrespect. I have learned to guard the little bit of life I have with the force of Thor’s hammer and a whole lot of Wonder Woman’s golden lasso. For this is who I truly am, a real life woman of wisdom, a warrior and a superhero.
About ME, Jane Holden
In 2018 I woke up with a virus, it lives unhealed inside of me. Consequently, I live with ME and disability among many other chronic illnesses. As a woman living with disability I have a story to tell. Many of my experiences are shocking unbelievable, however I assure you they spoken in truth. New ME: Volumes Of My Story Living With ME, FM and Disability are my true story, shared with the hope of spreading awareness. My greatest accomplishment for the volumes of the New ME would be to provide light to someone suffering in their darkest days with ME, the moment that they feel nobody cares about them, invisible and that they are suffering in this world all alone.