When life doesn’t really get better...

[Imagine]

Hi folks,

Well, I’ve been MIA a while now. After my world fell completely apart, and every therapy offered to me through the system failed, I gave up seeking answers and threw myself into trying to build a new life.

I’ve bought myself a house, learned skills I never thought I could learn, reached out socially, created a fb group for a personal interest that’s grown to hundreds of members and benefits charities and have continued to work all the while.

But my chronic illness has remained unchanged, I am still in constant pain and exhausted, medically unfit to drive, stuck in a low paid job because I’m not physically capable of more challenging work, and I’m not one tiny bit closer to the dreams I lost. My house does not feel like a home even after 3 years and lots of work trying to make it my own, because I live alone with my pets.

I feel like the life I have now is wrong for me, it’s not a bad life, I don’t mean to complain that I don’t have “enough”, I’m not ungrateful. But it feels like it doesn’t fit me and it chafes and makes me hurt deeply all of the time. Yes there are moments of pleasure in little things, but that’s just a band aid and offers no healing. I hide the depression because I’m either not wanting to burden the people I love any more than they have suffered already, or I’ve been told I should be over it by now (by people who have everything I’ve ever wished for).

My question is, what do I do now? I’ve run out of things I can think of to try. My younger self’s dreams were to have a career and travel the world with the love of my life. I can’t think of any new dreams that even come close to those shattered ones. The career is impossible, travel financially out of reach even without COVID and well, love, love isn’t for me. I also lost the home that I had put my heart and soul into when my health failed before my marriage failed too.

Would welcome advice please and thank you. There must be a way to learn to live with this quiet desperation, even if I cannot escape it.

Thank you

[Imagine]

Hi Pete,

Thanks for taking the time to respond to my post.

I’m sorry that you too are dealing with chronic health issues, a body that will likely never get better is an ongoing cycle of grief in many ways.

We have our good or better days, and appreciate them all the more, but there’s never a point where you can just grieve and move on because every day involves ongoing losses of opportunities, freedom, abilities and independence that keep on hurting afresh.

I don’t think any professional assistance can help with that. I think you have to either have a reason to endure it that’s much stronger than the pain, or to find genuine happiness in whatever things you can do within your limitations. I struggle with both though I try very hard.

Take care

[tranzcrybe]

Hi Imagine,

Sorry to read your medications are at their limit. Do you have any non medicated treatments like hydrotherapy, massage therapy, or even acupuncture? Although not a cure, you may at least find some alleviation for the duration of the sessions.

Imagine, I think we all possess happiness within us (no lottery tickets required!), but often it can be buried deep beneath the many contrivances of what we are led to believe life should comprise (career, possessions, even lifestyle itself).

The difficult thing for me is to maintain sight of two things:

1. the world as I see it, and
2. the world as it is.

What is even harder, is trying to reconcile how the one can be so far removed from the other!

Happy to take the journey with you, Imagine.

Regards,

t.

[Imagine]

Hi Transcrybe,

Thank you so much for your support. I’ve thought a lot about the things you’ve said, your perspective is very helpful.

Fortunately I am not on high doses of pain meds, I’m sure I could be prescribed higher doses if I asked, but I know that isn’t the magical answer to my chronic pain. I need pain meds to give my mind and body a rest, but most of the time, I do my best using non medicated techniques like those you have kindly suggested. I’ve been told I cope remarkably well with the pain but the prospect of years of more pain gets to me. It’s been almost 30 years so far. I still hold some hope.

I like the thought that happiness may not only be possible for me, but may already be there, buried beneath the weighty rubble of things we believe, that perhaps are not all they seem to be. Perhaps it is time to see if some of these contrivances can be cleared out of the way.

Yes, the world as we see it can be completely different to the world as it is. And we are always so quick to believe what we see with our own eyes without question. It is hard to reconcile those differences!

Thank you for your wise and wonderful insights. They help more than you know.

Take care.

[White_Rose]

Hello Imagine

Sorry I have not been able to post for the past few days. Unfortunately I have been unwell and won a free ride to hospital and an overnight stay. I can assure you hospital beds, especially those in the ER, are not as comfortable as my own bed. All good now.

Great insight to recognise you already have what you need to be happy and realizing it's probably buried buried under the rubble. Love Transcrybe's comment "to maintain sight of two things: world as I see it, and the world as it is." I think that is so true of most, if not all, of us.

Sorry to learn you cannot take additional pain relief. That must be so hard to manage and go about your daily life. I have found meditation works for me. It gives me an inner peace and far more acceptance of the world than I ever thought possible. Without trying to give a medical opinion I believe being at peace with ourselves can have a positive impact on how we conduct our lives. I don't claim it will stop your pain but I wonder if at least part of it stems from being anxious. Stress reactions must impact severely on your quality of life.

You can of course learn relaxation techniques which may be helpful. Meditation is more than this. I found it gives me inner acceptance of who and what I am. I'm a pretty ordinary person who is still learning about acceptance. Mindfulness is another way of focusing on what is happening in your life. I remember sitting on my patio, when it's warm enough, and listening to sounds around me. Traffic noise, bird song, trains, voices from other houses and gardens. As I listened and focused my attention on what was happening I found the world and the discordant noise slipped away and I was left with a sense of being alive in the middle of a chorus of birdsong. It was like being in a bubble in my garden.

I'm not trying to downplay your pain. I wondering if meditation and/or mindfulness will give you a deeper relaxation and help you manage more easily.

Mary

[tranzcrybe]

Hi Imagine,

Yes, keeping a handle on meds is important - ideally leaving enough to keep you aware but not debilitated (but don't be too stubborn - get what you need).

I support White Rose's advice on meditation or anything to help you to look inward (and perhaps shine a light on all that rubble you'll want to dig through).

-- speaking of lotteries, I don't think much of your 'prize', White Rose; and they make the beds that way on purpose to stop people extending their booking! Glad to hear you're all good again.

Imagine, thank you for your kind words. I'm pleased you are finding some comfort or just another perspective to help you determine your own path.

My best wishes are with you during your quest.

Regards,

t.

[White_Rose]

Hello Tranzcrybe

Thanks for your good wishes. I always wondered why the ER beds were uncomfortable. Now I know.

Mary

[Imagine]

Hi Mary,

I’m so sorry to hear you “won” such a “prize”. I hope you are feeling much better now. Ambulance rides are definitely overrated (fire engines are much more fun) and ER is never a comfortable place no matter how wonderful the staff are.

I’m trying to step back and look at the rubble from a distance. To see the bigger picture as I suspect I’ve just been kicking and punching and yelling at that huge boulder right in front of me for a very long time and it ain’t budging. I am tired. I need to find another way through the rubble.

Stress and anxiety are definitely factors in both the pain levels and how well I can cope. Also the resultant insomnia has been proven to be a seizure trigger for me so any way I can learn to relax would be helpful. I’ve been trying to learn meditation for several years (classes, tapes, books and a Buddhist class) but I tend towards a “monkey mind”. I will sit for 10 mins quietly redirecting my attention to my breath, then realise my jaw is clenched and shoulders are tense. I am persevering and am finding some methods that are easier for me than others, but I seem to be making slow progress. My garden is also an escape for me so maybe I need to sit out there when I try to meditate.

Thanks for your understanding of pain, you didn’t downplay it at all, but your gentle approach was lovely in a world where invisible pain is so often doubted. I will keep up my efforts to meditate.

I appreciate your advice and support very much. Please take care of yourself. Best get well wishes.

[Imagine]

Hi Transcrybe

My specialist says the same so my stubborn self is in good hands there. I do take pain meds before the pain breaks me on bad days most times now.

I will continue my efforts with meditation.

Perhaps the food is also designed to discourage extended stays? I can’t stay I’ve ever had much of an appetite the times I’ve been hospitalised, but I’ve been glad to get home to hot toast as well as my own comfortable bed!

Thanks again for all of your help. I wish you all the best too

[tranzcrybe]

Hi Imagine,

Sensible approach - meditation may help you to discover the 'boulder' need not be moved, but merely released.

Many years ago, I was 'fortunate' enough to have 10 weeks of 'concierge' service (and full service at that, as I was unable to walk) so I am an expert on hospital menus - no such thing as fresh cooked toast!

I say 'fortunate' not to mimic White Rose, but in genuine gratitude for being alive. The biggest thing I learnt was to accept others' limitations (as I was completely dependent on those around me) and I treasure the sacrifices made for me to this day. Many people came and went and I keep all their stories and the experience in the 'do not erase' vault. Whenever I find myself tending to a 'woe is me' over running out of Weeties (for instance!), I summon that spirit and am instantly restored (if only I could turn that into a pill... or a bowl of Weeties... mmm).

In fairness, I suffered immensely; but that wasn't my concern - just part of the the recovery process which would not go any quicker by me complaining or feeling deprived. Wherever you find yourself (and in whatever condition that may be), there is always something new to discover about others and, most importantly, about yourself.

I wouldn't wish what I went through on anyone, but I do feel privileged to have been given the opportunity to experience what so many never will (and come out the other side).

Recognising the difference between real and artificial, makes it very easy to find inner peace and happiness.

Sorry, it wasn't my intention to prattle on, but if you can find some meaning, then it will have been worthwhile.

Take care, Imagine.

Regards,

t.

[tranzcrybe]

Oops, I used fabricated in the context of things that are made or built, not invented - sorry for any ambiguity...

t.