A day out... I don't put on clothes much these days, so when I do, it's an event. lol. In this case, I needed to go to the Dr.'s to get my CPAP machine for the sleep apnea and go to the mall drugstore... So, an occasion, to put on clothes.

The trip wore me out, and thankfully I won't have to go back for a while, someone else can drop off the machine chip with my info for me in a couple of weeks time.

I actually don't have many pics of me in my wheelchair, I guess primarily because I lost mobility relatively quickly in some respects, and by the time I talked myself into a wheelchair, going out in the chair has also become challenging. I get a lot of cramping now in my torso and abdominal muscles when I sit for long. Someone was suggesting getting a brace, but quite frankly sitting up for a long time makes me feel unwell in other ways also, that I'm not sure bracing myself up by strapping another piece of expensive equipment to me is going to be much of an improvement. Besides, I have lots of lovely fetish corsets that serve the same purpose, and if I'm going to have a support structure take the work off my supporting muscles I rather one of satin with steel boning.

I had a hard time finding pics of me in the wheelchair that I liked... not used to seeing me in it. Also, I'm uncomfortable sitting up in the chair, and in some more pain in these pics, so I think the energy of that discomfort comes through.

It also doesn't help that I've put on about 30 lbs in the last 3 months. Not sure what's going on there, as nothing has changed really with me and my routine, it's just whatever my body is doing now. It's not like I haven't been a lot fatter in the past, at my highest weight I was 295 lbs, now I'm 215.

My chair is a custom jobby, and I have a fancy headrest too because my head gets heavy, which isn't on the chair in this pic. I also have a sheepskin on it for cushioning because I get touch/pressure sensitivity at times as well, so it reduces pain and discomfort from that.

The head shots... those I took while I was at home laying down, lol, I cheated... comfortable, I take a better pic...

It's hard, sometimes, sharing about, processing, my limitations, my weaknesses, my disabilities... they are a part of me, but at the same time, they don't define me in the ways that often people would assume, and I get tired of the focus being on the 'unwellness'... pain, fatigue, exhaustion, loss, these and other related challenges are things I face everyday, but I cannot let them become ALL of my life, or even most of my life... not and have the life I want. The life I want is a productive life, full of love, friendships, and positive growth. The life I want is one where I can make a positive difference in the lives of people I encounter. The life I want is where the focus is not on trying to determine where the pain is, where the illness is, and what it feels like.... but where the focus is on where the love is, where the wellness is, and what THAT feels like...

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Comment by Leila Raven on July 31, 2011 at 1:36pm
Thanks Susan, though its 225lbs now, lol. I've been hitting the ice cream a little heavy this hot summer. ;) I don't mind big curves myself though.
Comment by Leila Raven on May 15, 2011 at 5:00pm

I appreciate all your comments, no matter which facets of self they are from. *smile* We are all a complexity of things. We're all good people... and we're all bad people... and we're all just people, most of us doing our best in this crazy world.

I'm not sure if nabilone/cesamet the synthetic cannabinoid I take originated in Canada or not, if I did know I've forgotten. ;) But yes indeedy, I am prescribed this, and find it a very good medication for me in terms of managing pain, nausea, etc. Though far from the real deal, with greater side effect range. It's definitely not cannabis but it as far as the prescription pain killers go, it's one that works well for me.

Comment by Leila Raven on May 3, 2011 at 2:44pm

babalonuitra, we all just do the best we can... I don't feel I suffer much at all actually. I feel very blessed.

I'm sorry to hear you're dealing with such intense pain. Thankfully I don't need to use much in the way of opiates, I have a daily dose of time release tramadol. Most of my pain relief comes from synthetic cannibinoid specialty pain medication nabalone/cesamet. Which is helpful for me with dealing with other issues such as spasticity and nausea. 

My pain may be chronic/constant, but mild I think, compared to what many go through. I know some people get very little relief. I would say I get a fair bit, and my pain levels sit at around a 3-4 out of 10 on an ongoing basis, a low thrum. lol.

I'm thankful that for now I have good pain management with medication, it doesn't take it all away, but it's a bearable background thrum.

Most of my limitations personally come more from extreme physical weakness/fatigue more than pain.

I'm just getting caught up again from this outing, on replying to some emails and responses to some of my posts, but still have a ways to go to get up to date. Have to pace myself.

Usually when I break from my routine and have to go out to an appt. like this, it affects me for a week to two weeks, where I have diminished energy from my usual base. It's like a regular person having run a marathon, it just takes a lot out of me, to do most things. It all depends on other stressors, and how well I'm pacing myself, etc.


Comment by Leila Raven on May 1, 2011 at 11:09am

Thanks guys, that outing took a lot out of me... all the work involved in getting out and about does that, one of the main reasons I've been mostly absent last couple of days, still feeling the impact.

I've been taught all my life to put on a brave face, and my instinct is always to show my 'best' face, and I've been brainwashed into thinking that, the 'best' face is the youngest, prettiest, happiest, thinnest, and all kinds of other -ests. Instead I have to remind myself that my best face is my authentic one...

Showing socially percieved weaknesses is challenging.

It's funny because recently I had an online friend believe I was exaggerating my health issues, I realized how much of myself I do hide. My real life friends and family and loved ones know how hard I fight all the time to hide and minimize my health issues, and how much they are always encouraging me to do less and rest more as they see me pushing myself.

It's not really that I want to be deceptive about how ill I am, and downplay situations to people, but I don't want people to be focused on thinking of my health issues, and pitying me or feeling sorry for me, I guess I tend to downplay my health issues because people tend to be far more upset about them than I feel is warranted or healthy for them or for me.

I want to focus on my wellness, not my illness, but I think at the same time I need to show more facets of my self in terms of my health, etc.


Comment by Leila Raven on April 28, 2011 at 3:14pm

Thanks Nova... it's a strange world, strange synchronicity everywhere, this blog posted at the same time as I receive messages from an online friend that dissapeared out of my life without explanation only to learn they believed/believe of all things that I exaggerate my illness. Though they don't say to what purpose.

This is something I've had to deal with, unfortunately, a few times, even from within my own family. This is a really common issue for many people with FM/CFS and other 'invisible' illnesses do. We don't 'look' sick. In fact, I don't even think of myself as 'sick', so I'm not sure how I can be seen to be exaggerating an illness.In fact, I downplay my symptoms and my health issues and hide them as best I can most of the time, as my natural mode of functioning.

I like to feel 'in control' and not be perceived as 'weak'. Also, too much of my life IS impacted already by my health issues that I often want to use my time and energy focusing on other parts of life. I've stopped spending time researching 'cures' and 'treatments' and theories and spending all my time trying to obsess on what's happening to me and why. I've found that just accepting whatever is going on for me as 'normal for me', and coming from a place of faith in... nature, that we're all meant to age, fall ill, die, move on, and that what's important is focusing on living the life I DO have. Not living the 'illness' I have.

So much to think about lately... lots of challenges in exposing myself to a lot of new people in a short time in creating this site.

Comment by Leila Raven on April 28, 2011 at 2:34pm

Thanks guys, it's a challenge, to talk about oneself and ones life, and be able to talk about the limitations and challenges and not have it become and all consuming pity fest... Yet if I don't talk about it then, I'm not really being authentic, I'm holding back huge parts of myself because I don't want to deal with discussions around.

I have a need to process and blog around health issues and as part of my own support process, yet I find it's a fine balance, and can quickly feel like I'm focusing too much on the negatives in my life and not on all the blessings that I do have.

Phree, I do feel I'm living the life I want, and the life I need, and the life I love.... I feel very blessed. *smile* But I'm also cognizant that it's a process, and one I'm responsible for, creating the life I want... being and working for what I believe in, that's self fulfillment. It doesn't matter really the outcome of the work, if the results are big or small, only that I make my best effort.

What's the goal... take each moment of life, and make the best of it for myself, and for those I'm sharing that moment with. Each person, each scenario, each encounter, each breath, each step, each meal, each word... savour it, and make it as meaningful and positive as possible.

I've come to realize that life is really in all the little details, how we treat one another on a day to day basis. Whether we move through the world empowering ourselves and others, or...

everything we do has power and consequence, and I try to walk a gentle path.

fenzero, spring... a pink hat... it had to be done! I also needed the energy boost from some bright colors. Though the main reason, one of my family, Ash, had just knit me a pair of beautiful pink sheep wool arm warmers, it's the first thing she's ever knit me. I wanted to wear them, so I matched the whole outfit to the arm warmers.... lol. You can see them in the bigger pics, I wore them all day. :) Nothing better than things made with love by family. So they're my current most treasured article of clothes.

Karen, funny synchronicity. Last night was my first try with the machine, with my pain issues, I may have a harder time adjusting and have increased discomfort using the machine, it was a challenge last night, with my face getting sore. I'm hoping I get used to it over time, I know it takes a while and there is some pain for some people trying it at first even without having sensitivity issues. So I'm hopefull. 

I will also be going and doing a sleep study in a couple of months time and they will wire me up and investigate again more thoroughly. It's not quite typical apnea as I can also have difficulties with daytime breathing occasionally... breathing is a lot of work, we take a lot of our body actions like digestion and breathing that happen automatically for-granted. When the body is weaker though, often what normally happens automatically becomes less automatic and slows down. At least with breathing I have some conscious control, while digestion is mostly out of my control. Though I do find myself during the day realizing I've stopped breathing only because I find myself doing the gasp.

Whatever it is, it doesn't seem overly serious at this point really, and it according to the readings surprisingly hasn't impacted my over all oxygenation that badly so far.

It seems I can't even have normal sleep apnea, even my 'disorders' are 'disordered' more 'atypical' blah blah blah... lol. Bless you Karen, for all the work you do caring for others, both 'at work' and 'off work', you're always on as an earthly angel. *smile*

I had a good nap! and when I woke up my partner gray had a green tea frappe from Starbucks with protein waiting for me... my favourite treat. Life is goooood.

Comment by Leila Raven on April 28, 2011 at 10:55am
Also should add, going out takes a lot out o me... so I'm going to be a bit slow getting around to everything on the site over the next few days, pacing myself... time now I think for a nap. Don't hesitate to contact Admins for help, our Admin team are great folks, also members themselves are a helpful and knowledgeable bunch!

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