I must confess, the main purpose of this post is to try to help me make sense of what I'm feeling right now (4am here!) and to process some stuff that seems to be stopping me from gracefully accepting my current circumstances. That said, I hope this post is helpful to others out there who go through similar dark nights where hope feels like it has gone and where the isolation and frustration overwhelms. Also, perhaps it will serve some purpose to those of you who live with, love or know someone with a chronic illness. An insight into that type of life.
I'm told I'm doing very well for someone so new to chronic illness. That I'm moving quickly through the various uncomfortable phases of having to adjust to a new life. To be honest though, I think exactly the opposite. The people I think are doing well are the ones who have managed to survive this existence for so long. It's simply beyond my comprehension how anyone can live this life long-term. I have massive respect for their perseverence and determination.
Tonight is one of those nights where I can find no peace within myself. I can't see past how isolated, lonely and sad I am. How I am living in what almost feels more like a tomb than a home now. I have people who love me and care for me and I am always so thankful for those people. But, even those who are closest to my heart cannot join me in this. Life goes on around me and it can't all stop just because I am no longer able to take part in it. The irony is, given the choice previously, choosing my own company would always be pretty high up the list of preferences. There was always plenty I could occupy my mind with and I never grew bored of myself. Now being alone has become default rather than choice, it kinda stinks.
Thinking about the future is very frightening. If I am sat in the same place, thinking the same thoughts, a year from now - I'm not sure it's a future I want. I don't yet know what has to change (and I acknowledge I am limited by many factors in terms of what I can change) but the status quo cannot be an option for me. How do I manage to keep a relationship together when our daily existences are already so far apart and when I now have so little to offer? How many visitors will I get in 2011? Probably not many. How old will my nephew be before I can be well enough to enjoy some time with him?
The only people I feel connected to right now are others with chronic illnesses. I'm so blessed to have 'met' some amazing people who are fighting similar battles but they are scattered all over the world and I cannot even make it to the end of my street. In a way, it's a further twist of the knife. There are people out there who I can feel accepted by and who are content to just sit with me in my pain but no amount of emails or virtual chats can equate to the physical presence of someone just 'being there'.
And so, for any readers out there who have a loved one in a similar position to me, my advice would be... just be with them. Give them your support, silently if need be, and your full attention. Make them feel less alone in the world. Forget the urge to distract yourself with TV or chores. Just experience their reality with them for a while. I guarantee it will mean the world to them.
This would usually be the point where I would read what I have written and either delete it or apologise for sounding so sorry for myself. I'm not going to do that this time though. Censoring my feelings to protect others cannot be maintained all the time. I'm hurting, i'm lonely, i'm angry, i'm resentful, i'm feeling sorry for myself, i'm hating the concept of fate and i'm afraid for the future. That is my truth tonight.
goosebumps...even though i knew most of it. and you know all my thoughts too, so all i can do is send more love your way. XXOO
ReplyDeleteI'm so glad you managed to get this out ... it's something I think we can ALL relate to and most of us are not brave enough to say. Thank you! xx
ReplyDeletethank you barry.AS a veteran i say, find something to hold on to- physically. i have a set of beads , one bead for every good time , as a christian i have a wooden cross shaped to fit my hand , i have a favourite pillow and a little pink teddy bear from my grand- son .Sometimes all i can do is hold on . Wishing you a special comfy blanket this night
ReplyDeleteI really loved that. Said so beautifully. So glad that you didn't delete it. I feel like I am only completely understood by the amazing people with this illness too, as hard as people try to understand they just will never.
ReplyDeleteits 1:00am and can't seem to turn off my mind. i've had a really bad day emotionally. my husband had to take a job (temporarily) outside the house. we have always worked out of our home in business together. our business has been one of those that has sunk with the ship named america:( so today i feel esp. lonely, isolated, very sorry for myself and not sure of the future at all.
ReplyDeleteso i turn my computer back on to see if there are any m.e. friends on fb. no one at present. then i see you posted a new blog post.
i suppose it is no great mystery that you are feeling much the same. i, too, am thankful you put it out there and didn't apologize...making me feel a bit less like a whiner because it is easy to feel compassion for you...for myself...not so much. thank you.
i remember in the early years being jolted by the fact that life goes on without me. that takes some getting used to.
as di says, "as a veteran", i will say i do know that when you think you just can't take anymore...you take it hour by hour and even minute by minute. eventually, the human spirit wins out...at least it has for me and i believe it will for you too. you have a very strong spirit...braveheart. xx
nice one Barry. xo
ReplyDeleteZab
Hi Barry, as Elise says, sometimes you just have to take things a day (hour etc) at a time and weather these hard periods. As another veteran I will say that it does get easier, the grief and adjustment takes time, and will keep rearing it's head again and again, especially if circumstances/symptoms change, but I have found it lessens over time and you learn somehow to adjust to this life. The uncertainty of the future is hard to deal with, but it will never be exactly as we imagine even if we are still unwell. Everything changes and shifts, sometimes imperceptibly, but I find great comfort in that. You will not feel quite this bad soon. We are all here for you, even if not in person.
ReplyDeleteBarry have experienced & still do have many of these nights full of angst & frustration & fears. Don't know how to keep them away, part of the process I suppose. Of course you are going to think about the future & the many impacts this illness can have. Some nights we need to process all those worries & fears to make sense of them, unfortunately some nights they just swallow you up & take you close to the edge. I like di's 'holding on' to something. Personally we should all find something comforting to hold onto, an object or a mental image. Something that m.e cannot seep it's night time horrors onto. Xxx
ReplyDeleteBrave post Barry....very brave...and thats why you are doing well, even though at times you can't see it. Your honesty with yourself and with 'us will see you through the darker patches.
ReplyDeleteJust because some of us here have lived with this condition for so long doesn't mean we're always coping any better than anyone else or have coped better. It just means we've somehow managed to get through another minute, hour, day, week and hold on til the tide turned, the moon waxed and waned. It IS bloody hard ...no point in pretending...and the fears and uncertainty are terrible to bear: not just fears about health but about relationships, money, future etc. etc. but in the end nothing is certain for anybody ever. It never was in the past...it just seemed like it might be.
All I know is that after 10 years since diagnosis and God alone knows how many years of actually being unwell, I do recognise a good and brave soul when I meet one...if only virtually and so when I connect with someone like you I'm connected all the time, in spirit. So, even if you won't give me your address [ :O) ] (cant help a little joke) I'm still there with you and so are the rest of us willing you on. You won't always be able to 'speak to us/contact us because we won;t be online all the time...but then it'd be the same in real life --- if you came round here for a cup of sugar I might be out :O)
Sometimes I find distraction works best in those circumstances and sometimes writing stuff or drawing stuff down. You will find a way....you're in a dip in a tough learning curve.
Personally I take myself to places that make/made me happy and have a mental/virtual walk around and I listen to music that calms me or makes me happier.
(*) Hug x
Barry, we are here for you. All our love, Judy & Rob.
ReplyDeleteI'd normally make a point of addressing each comment individually and using it further analyse my thoughts but I'm going to avoid doing that, this time.
ReplyDeletePlease just know that each one of you taking the time to offer your support, understanding and personal perspectives is worth a great deal to me.
I do, though, think a common theme shines through here. I look to those of you who have survived this long-term and see there is no magic formula or 'easy' way. It is a case of clawing through, minute by minute. I guess I need to get into that mindset and let the future take care of itself.
Thanks again everyone. Truly blessed by all your kindness xx
Dont know what to add to all the other beautiful responses you have already had. Reading your post was like listning to my own thoughts.
ReplyDeleteOver time i have had to and am still going through an intense grieving process and all that entails.
Having something to hold onto no mattr how big or small is also how i got/get through these kind of days and nights.
In the early days though i wouldnt make it through and i carried a tiny piece of paper in my pocket all the time which just said mummy i love you.
It got dog eared over the months and it was THE thing that got me through when i felt i could cope with the emotional and physical strain no more.
I hear you Barry, very clearly. xx
You wrote, "But, even those who are closest to my heart cannot join me in this." THAT is a powerful statement. I teared up reading it because you summed it up perfectly.
ReplyDeleteI have been on this journey (M.E./CFS) for over 20 years and there are days that mimic what you wrote here.
Somewhere along the line I found my purpose, I found my way, and I now have more friends online than in the flesh, but I can say that I will be okay and I'm going to make it.
Thank you for sharing this. I really appreciated being allowed into your time of processing.