Thursday, 4 June 2015

Rare Trips Out & Body Recovery...

image: Tumblr via Google images

Those with chronic illness know that a house bound life is no dream. It's physically and mentally draining to feel so stuck in a house when your body is too weak to let you go out on your own terms. Some days I crave the change of scenery other than the view from my bedroom window, which I have become accustomed to since I became housebound many years ago. Sometimes I crave the ability to just feel the wind on my face at my own peril. You crave the desire to live a regular life, be able to work full or part time, socialise on a weekly basis, do normal things and see what this world has to offer you outside of your front door. The reality of living with chronic illness is quite the contrast of being ' so lucky' that you get to 'rest in bed' and can be greatly frustrating at the best of times. Your mind wants to be living an active lifestyle but your body doesn't work as a team with this aspect.

Every small detail of a rare trip out is a military operation. Usually, starting the day with lack of sleep because of the pain that you may have experienced during the night, the preparation of getting ready to leave the house takes many, many hours. The time of leaving is usually pushed as far back as possible, my days usually 'begin' towards the end of the day, past 4pm if any plans can work that way. For a chronically ill person, firstly there is the effort and ability of physical attributes in order to leave the house. Showering or bathing, dressing yourself, applying make up, styling your hair, finding time to eat, taking your medication as well as finding the time to rest because of unwanted, unpredictable symptoms or drastic pain turns. Quite simply, exhaustion doesn't come close to all of what it takes a person to get ready to leave the house. The term 'start as you mean to go on' comes to mind in the form that exhaustion will then not be any easier from this point forward in order to continue your day. Although exhaustion has already hit by step one, all of these things are naturally things people do before leaving the house. It is truly taken for granted by healthy beings yet we sadly only know this because of living with chronic illness, if it was not the case, we wouldn't truly appreciate the ease and ability to get ready without dreading the upcoming activity. I honestly can't remember the last time I looked forward to getting ready or got ready with ease, it was probably a decade ago. All of the above and more will leave someone with a chronic illness, spoonless. This term is used for those with chronic illness to back up the spoon theory.

The combination of being in pain whilst outside of your comfort zone is something that is dreaded and daunting. My anxiety levels soar when out of my comfort due to pain.  I am quite good at coating how I am truly feeling when outside and around people who are not drastically familiar with my pain and symptoms. I find it's better to keep myself calm and hope for the best in order to not elevate any symptoms more than necessary. Pacing your day, from the minute you wake up to the end of the day becomes something you desperately cling to in hopes of making the outing run as smoothly and efficiently as it can with a chronic illness. It is a key element, but also a lingering worry in what may happen if symptoms take an unexpected turn for the worse. 

The achievement of a trip out is highly fulfilling in the sense that once midnight hits, you know you got through a rare occasion of finding the ability to push through and leave your home for some enjoyment or a necessity. A trip was managed, however painful it may have been, or however long you may potentially suffer afterwards because of it. In hindsight, it is something to feel proud of when you look back. It's a very big deal to somebody who is chronically ill to get out, whether they feel the need to verbally express this or not, inside they will be thinking and adjusting to just how big a deal it truly is. Not only on the toll of their body but mentally too. Although, it shouldn't be this way, we really are grateful for the times we manage to get somewhere, no matter the amount of work or repercussions that may arise from the occasion. We know how limited these moments become in our everyday lives and appreciate them for what they are, good or bad.

Even the ability to attend hospital appointments is consuming. Consultants don't realise how much of an effort it takes to get to hospital after the aftermath of getting up, getting ready and the journey to the location. Such an early appointment can throw your whole day in turmoil but you know it's something you need to push through. Finding the correct balance of prioritising your energy for trips out physically feels like old cast iron weight scales where you can never quite get the balance right. You over do it every time, but its hard to know what to use energy on or save it for when there is so much leading up to getting you out the door in the first place. However, you need to sometimes push yourself for your mental state and then suffer with the intense pain but understand that it was worth it. It's not right to feel like a prisoner in your own home and leaving your house is a necessity if you can manage to. Sometimes, I feel like I have cabin fever from being in my room for weeks on end and wish pain would ease for me to escape for a few hours.

You have so much desire to leave the house and see the world, however illness leaves you lacking in physical abilities and energy to do so. It's crazy to me that people can run daily errands alongside jobs, families and social lives and I often wish I was a part of that world. I often feel like a prisoner, then I feel guilty. My disability might cause me to be housebound, but there are aspects of my misfortune that make up a fortune compared to some. I am so lucky to have a bedroom with a bed, necessities in my house, a garden if I want some fresh air. In some parts of the world, others have nothing and I am aware of that when my thought process becomes that of a downer. But on the opposite, I am also living in a part of the world where everyday living is what we are accustomed and used to. Working, socialising and living is something we are lucky to know as second nature in a wealthier part of the globe.

Those with chronic illness will know that pain arises often from doing nothing at all, so imagine how it can get even more severe when we actually do something. If something feels worth it to you, then do try to push yourself in order to gain and achieve something or make a worthwhile memory. There are so many times where I allow my pain to talk me out of doing something, because it doesn't feel possible. Sometimes, I am right in resting and trusting my instincts and sometimes I beat myself up over not pushing myself to go. Having lived with chronic illness for nearly a decade, I have become accustomed to knowing my limits, gaining a better understand of my limits and being more accepting towards them. It is a working progress, like most cases of adapting. It's not a case of this aspect becoming easier, it's a case of accepting my current position in illness, which at times is easier than dwelling.

Ultimately, the repercussions of a trip out are never going to be easy to get through. Your body has gone through much distress from travel, movement, arising symptoms and the physical draining elements of a day in the life of coping with chronic illness. It can be quite mentally challenging to accept that a rare occasion out can leave you in so much (physical) distress. It's not normal or common to be in a position to not be able to leave your house on a daily basis. However, as hard as sometimes it may be to accept this, we have no option other than to try and not dwell on this. It is a case of it is what it is, if we felt healthy or able enough, we would definitely be able to be out more. No one chooses to be housebound and the majority of us will try our hardest when we feel able or if our illnesses potentially become more controllable in the future.

Typically, if I have been somewhere, this is how the next few days seem to look. The evening of arriving home, I am usually in tears. I feel like my body has been flattened by a road surfacer, run over consecutively or been in a high impact crash. Sometimes it can be painful to sit in the same position for a prolonged time, whether that be a car or a wheelchair. It's not something that many would take into consideration. Sitting in a wheelchair can often leave you in pain. Although it's more difficult, dangerous and draining to walk when disabled, sitting is painful on your legs, knees, back and overall body comfort. Considering my syndrome involves random joint dislocations, this is a difficult aspect to abide with in itself. I also notice a drastic change in my mood, it changes for the worse. You'd think that something so rare would make you be on a high compared to the consistent mood you become accustomed to when housebound. I always find that rare trips out make me think more about life and why those occasions have become so rare. I get back into thinking what I can't manage rather than focusing on what I can. It's a minor set back in my mental state but it's something that has always affected me. The parallel feeling of a high that you've succeeded in what you set out to do and the contrast of low, in feeling like what you achieved is something so simple to healthy beings. It's like you have been given a slight snippet of what life could and should be and then have someone take it away from you. Like dangling bait to a tormented animal.

Severe insomnia tends to kick in after a trip out. I only usually manage 3 hours of sleep a night and have done so since I was 15 now. However, I find when I have participated in something different to my everyday housebound life, I am so alert from physical pain that I can sometimes be awake for 48 hours straight. It's insane how you can be so psychically and mentally exhausted, yet also so awake from adrenaline occurring from the impact pain is having on the body. It's not a case of being able to rest fully for one day and your batteries miraculously recharging like a healthy beings would. I usually find two days after a trip out I am much worse and seem to be in a bigger flare up than usual. It feels like my body never actually recovers because of my condition. My limbs become incredibly swollen, heavy and hot and most of my symptoms go into meltdown mode.

The pain I am experiencing at this point leaves me feeling frustrated, snappy and short tempered without meaning to be, which is a quality I'm not happy with.There are times where the only way I can comprehend my pain is to have a good cry with frustration. Other times I feel anger or numbness. Pain makes us worthy of all of these emotions. With the extra pain that comes from a trip out, my frustration in my body's abilities and limits is something I question and feel anger towards. I often feel like I want my Peter Pan esque shadow removed from me to elevate how I feel inside compared to my physical abilities being held back as a disabled person. I shouldn't be like this because I know I am trying my up most hardest with finding a balance between my happiness and my disability. I need to work on being patient with my limits as well as continue with acceptance.

There comes great fear when you have been out and a couple of days later someone else wants to make plans with you. It always seems like everyone becomes 'free' on a week that you are finding illness and socialising extra difficult. It's hard for able bodies to understand how much just one trip out may set you back or just how much you will pay for it days and possibly weeks later. What I now try to do if occasions like such arise, is work with the person and try to adapt the situation to suit my needs a bit more. However it's hard to also make them feel not too bored or underwhelmed with the disabled friendly plan but they are usually understanding so that you don't have to miss out. There are other times where you just cant be bothered, you feel so drained and consumed by pain that you just simply, hibernate. Sometimes, you just don't feel it's worth the amount of pain to push through and that is OK too. 

I often feel like my body is failing me when further trips out seem to become more difficult to cope with over time. The question of why I can't manage an active lifestyle everyday is something I hope to get over in time. The repercussions of a trip outdoors may put me off wanting to carry on trying at times, however I know it's necessary for my sanity, happiness and life to carry on making plans when I can and seeking some enjoyment from trips out. I am working towards just feeling happy and content in the fact that I managed something without any disheartened feelings towards why it's not a common aspect in my life right now. Unfortunately, those with illness will probably suffer from a slightly strenuous outing. You may feel predominantly worse from a trip outdoors, but if it's meaningful and worthwhile enough for you deal with the upcoming pain, then it becomes a high priority in your survival of living with chronic illness.


  1. Hey Nancy, I totally agree with you - road trips can be extremely difficult when you have a chronic illness. You never know what will happen during or after a trip. The last time we traveled by SUV to visit my grandmother (nearly 13 hours away), I was rewarded with a very painful 4 day Fibromyalgia flareup and migraine headache that wouldn't respond to my regular medications. However, the quality time I spent with my grandmother and relatives was well worth the pain. I commend you for your positive mindset, faith, commitment, perseverance and always being willing to help others. You are very wise - far beyond your years. : ) I look forward to sharing in your journey. Fibro hugs.

  2. I totally understand what you mean. My van broke down and the children and myself decided to walk to the store and bring back a few things. It was a difficult trip back and I paid dearly the next day and since then. For a moment, I had "forgotten" to monitor my activity level.. that won't happen again!