Summer has historically been the hardest for me my entire life and today I was thinking back on how my struggles with this season has changed over the years.
It used to be a time when I simply loathed the searing heat and the inability to spend anytime out in the sun without burning and melting, these days the heat brings with it so many more challenges!
Although, summer does mean an improvement in the torturous joint aches which comes from the cold and damp of winter, the fact is that heat is also a powerful enemy now too.
There is a range of temperatures and conditions where I can have my best chances of relief from the effects of these illnesses but once that range is exceeded then things start to go downhill, fast.
Arguably one of the more difficult effects of the heat is that it now causes me to quickly lose my vision and things start to become little more than a blur. It can be extremely frightening but I have learned that this is just the way it goes, my vision will slowly improve as I cool down and rest but it always frightens me. Always.
I will also start to lose control over my limbs and they will feel more like awkward, clumsy, heavy weights and I consider them little more than painful tripping hazards. I start to walk like I am wearing flippers and my muscles feel like they are filled hot, painful cement… And they ache terribly! They take hours of resting and sleeping, sometimes days, before they will give me some release and before I can move again.
Too much heat and I will struggle with my balance even more. It will be completely gone and I will feel like I am being spun around and free falling, even when I am lying down.
Too much heat and the fatigue I experience is the most wretched imaginable. It is often the hardest and worst symptom of all! I described it recently as though you have been dumped in the middle of an angry ocean and left to tread water for a month. The fatigue you are fighting is constantly dragging you down and threatening to drown you unless you fight through it. It becomes hard to breathe. Hard to lift your limbs. Hard to swallow. Hard to move. Sleeping and resting becomes the only things I can do, and no amount of sleep or rest will ever restore me to strength. It simply sustains me.
Summer also means headaches and migraines. Cluster headaches are more painful than most people can comprehend. They are not the things where a mild pain killer and a cup of tea can fix. Far from it. They are like knives and picks buried deep into your skull and threatening to rip your brain apart. Nauseating and unrelenting.
Although summer is traditionally a time of holidays, parties, celebrating and activity for many, the truth is that summer isn’t kind for many and I am one of them.
Don’t get me wrong, I love many of the joys that come from bright and sunny days. The flowers, the clear skies, the hive of activity everywhere. It’s wonderful. I only wish I could take part in it much more! But I also grab hold of my better days and do all I can to enjoy every second of them! I feel like a child on Christmas Day on those better days!
Summer sunshine always tends to lift the spirits and make life seem brighter and I find that it is definitely true for me too. People tend to smile a lot more and just feel a lightness when we look out the window and see a bright and clear day staring back at you. I still love looking out the windows and being greeted with bright and warm sunshine. I am lucky that my house has numerous big windows and skylights! I can bathe in the brightness from anywhere in the house but I also have air conditioning blowing much needed relief to keep the temperatures within a manageable range. When the climate control breaks down or we have electricity faults then I brace myself for the worst!
The other day I experienced one of my better days and so I seized the chance to go outside and take in the air and wonderful breeze from the ocean. It was pure happiness. The flowers were glowing and my furry companions were out investigating every corner of our garden. This is my idea of bliss. I sat in my swing shaded by my native plants and I soaked every moment in. Pure bliss.
Every season means something different for people like me and what we will have to cope with and endure. From the cold and damp to the heat and exhaustion, I feel vulnerable to the elements, but I have also learned to try not to dwell on what I can’t change. There is nowhere on earth that offers the optimum climate for Autoimmune illnesses throughout the entire year. Nowhere. And sadly the medical profession seems to not understand the extent to which climate and weather affects our daily challenges. They don’t comprehend
Because, regrettably, I have a list of autoimmune illnesses and various other health struggles, I feel like the battles are many and incredibly complicated as well as being poorly understood. But I have also reached a point that I feel less inclined to explain my battles and I rather try to use my energy to endure them.
Don’t get me wrong, every chance I get I laugh, smile, enjoy, create, live and try to be part of this world. It will always be my constant focus and goal, to live a life I am proud of. I am sure that this is what binds us all. Every autoimmune and chronic sufferer out there, no matter what the season or circumstance! We want to taste life and not simply exist.
No matter what the season there will always be a battle which comes along with the weather and seasonal changes. Sometimes during the hardest of times in summer I will think of the joy that Autumn may have in store and the possibilities of relief from some of these challenges, however I also don’t want to spend my life always waiting for another season to come along and rescue me.
Winter will have its own painful battles in store and I will be forced to look out on cold, damp and dark days again and feeling every joint and muscle crying out in hot searing pain.
It seems to me that life is made up of many changing seasons and the challenges and events that come along with them. Although they may be far more difficult to manage and cope with when you have chronic health and pain, nevertheless we have no choice but to face them as best we can.
I am always painfully aware that we have limited numbers of seasons for which we have to make a life from. I can’t deny that there is a great deal of me that feels particularly saddened by the knowledge that most seasons of my life will be filled with battles and struggles that most people my age will never comprehend, almost as though so much life will been taken away from me. Snatched away. So many days I feel Ike a prisoner behind windows and inside a tortuous body, it is in those times I must force myself to remember the happy moments from each season and some of the lessons learned in each of the years.
Looking back I have seen quite a few summers and winters now, and I don’t know how many I may have to come, but I have to be able to make peace with my best days and my hardest and that is one thing that never changes no matter what the season.