So after years of reading all the ‘power of the mind’ messages. All the detox, cleanse, healthy, low inflammatory, aunty Emma’s cure all’s and body healing ointments, all the meds that any specialist could throw at you, you may find yourself still progressing with illness and the worst case scenario’s may still be coming true. What now?
What happens to those that have done everything they could, done everything they were told and fought as hard as the could for as long as they could and STILL they have pain, a myriad of symptoms and not a very good quality of life? What happens now? Is it possible to find positivity anymore? What would positivity in these circumstances look like?
There are no simple answers for those who fall into this group and there doesn’t seem to be much by way of empathy either. You may be labelled as a lost cause by many, a cautionary tale by others but very few people will truly understand your body and your health’s limitations. Very few, except you, and maybe your carer or spouse.
It seems hard to find the right words to say at this point because while current medicine and alternative measures may have failed you, you must still face the difficult task of finding a way to keep going although this could be agonizing and difficult at times.
Your world may now be defined by the boundaries of your bedroom, or wherever you may be moved to. You may be reliant on a number of devises and aids to do the simplest of things and life may seem to be one long ‘ground hog day’ which can repeat over and over. So what can life offer now? There are no manuals or support groups for this point in your life. If there is I haven’t come across them yet. No one likes to even think about these types of scenarios, let alone talk about them. There are no motivational booklets and quirky little motto’s that can possibly remedy this sort of situation. Except, maybe, one. Love.
At this point in your journey Love may be the only thing that is seeing you through the days, months and years. Love is what is trying to pull us trough the tide of emotions and pain. Love is why we continue to put on a brave face and what we hold on to when all is said and done. Love for our partners, love for our children, love for our friends, love for our fur kids. We exist entirely for those reasons.
I think once you become bedridden and progressively disabled. There is no presumption, no competitiveness, no false modesty, no time for vanity, no room for delusion or need for explanations. You must accept that you are who you are and that life has many, many different states that few in this world can comprehend. Your truth is what you live with every moment of the day and no one can tell you what you ‘should’ do anymore. And you need not conform to anything other than what you need to do to survive.
When at these points I think you have earned your right to speak loudly and proudly. You have earned your stripes on the battle field and no one should tell you what to do. Your voice is now your true identity and I encourage you to use it. Tell people what you need and what is needed, without fear or hesitation. They are not going through this, you are. Think about what you ‘can’ do (even the smallest thing) and discuss ways in which this might be included and managed. For example. If you like music. Can you listen to some for a little while each day? Can you read? Can you draw? Can you bare a visitor for 30 minutes? Do you enjoy more time on your own or with a beloved animal? Whatever the whim, indulge it with relish it with a passion unknown to others. Soak it in. Swim in it. If you feel the pull on your heart to say something say it. Cry. Smile. Touch. Rest. Whatever… You have earned it.
If you have any desires left that you would like to imagine. Be selfish. Put up boundaries. If you cant be visited then perhaps you might prefer to skype once a week, or just tell someone people that your preferred forms of contact and don’t feel guilty about it!.
Find a team of health carers who will come to you when needed. If you want to have some personal grooming, and you can handle it, find someone who is willing to come to you. I guess I am saying, don’t let regret, unworthiness or self doubt get comfy at this time. Its normal to wish that your life had a different destiny or path. Its normal to want the pain to end. Its normal to wish it wasnt happening but for better or worse this is the hand that was dealt and we must somehow bare it.
If you are able to reach out and find someone who might be going through a similar stage of life, do so. If they share and respect your feelings and you find comfort in sharing your thoughts and experiences with them, then it can be a truly rewarding connection and worth the effort to cultivate.
I still like my bedroom to be surrounded by pictures, pretty things, smells, life, cuddles, sounds, nature, and love. That is my choice. I don’t have to explain my choices anymore and I don’t feel I need to defend my wishes anymore. I have lost so much that I don’t fear losing people who bring no peace or quality for me at this time.
I don’t feel obliged to meet anyone’s expectations but my own. I treat people with the respect I would like to be treated and I don’t over invest in other people’s opinions or drama.
When all is said and done. The things that I have left and treasure the most is the inner peace and self worth that I can give myself. The honour and respect that I pay to myself. I don’t pity myself nor look for validation. In the end I am truly me and I hope that you find your own reward for having fought your way through the challenges of life. Sometimes if I close my eyes I feel like I can connect with you all and feel you all wherever you are, all over the world, and that brings a sense of comfort that no medicine can give.