Although I do not technically qualify as a real recluse, I do consider myself to be close enough to qualify.
My disqualifications are: I live in my son’s home, where my husband and I have semi-private quarters, sharing the main bathroom, the kitchen and laundry room. I speak to my daughter-in-law regularly,as she is also a chronic pain sufferer. She had a large tumour removed from the base of her spine when in her early 20’s…being so young and living with all that comes with chronic pain while still maintaining a great disposition is impressive to me. I see and speak to my son at supper time as he retreats to his upstairs quarters and rarely puts in an appearance during the day. I speak to my hubby when he gets home from work. I go to the local library, the doctor’s office and sometimes a relative will visit me.(I’m talking months and often years between visits)
While writing down my live human contacts, I realize it seems like A LOT to me. To anyone who knew me way back when, brothers and sisters included, I am almost unrecognizable to them. They find my remote living conditions perplexing, often wondering out loud why on earth I would choose to live this way. I even had one sister say we live like pioneers LOL She definitely is a city girl with a tendency towards exaggeration. Anyway, they all knew me when I was young and mostly carefree, flitting here, there and everywhere, never complaining and always laughing. They are surprised to see me now, how I am, but when they allude to wanting an explanation, I tell them it’s because I’m old now.
I do not share my chronic pain information because I am in no mood to defend myself when they will question the validity of it. I am in no mood to verbalize to anyone the extent of the pain, or the change in personality as I work to accept my own limitations. It is exhausting for me to have company but I love them dearly and I am years without seeing them, including my own daughter and grandchildren. It makes me sad to be unable to travel to visit them when I miss them, and it makes me sad when they choose to not visit me. But it is what it is and I don’t really have the energy to change it.
It may appear that I deliberately keep my pain a secret of sorts, which I guess is true in a way. I just don’t want any of their potential pity, I don’t want it to be the focus of any conversations that I may have with anyone in the future and I mainly don’t want to waste my breath in any way.
I barely talk about how I feel to the people I live with, hubby included. I explained to them once about how I feel, prognosis and such and that is enough. Why do I need to remind them what’s what? Sometimes, when hubby asks how my day was or how do you feel today, I snap at him, always saying “do you think I was “magically cured today?”, or “do you think I’ll say something different?”.
It just exasperates me.
Less than 10% suffer from constipation…I say that’s easier for me to deal with than the opposite💩
Less than 3% suffer from increased sex drive…I hardly can imagine anyone complaining about this particular side effect. For me, my libido went on a permanent vacation 30 some odd years ago 🏖
The return of the sex drive at my age is…disconcerting. Hubby is a 68 year old prostate survivor, in remission for 10 years now. That in itself is cause for celebration…he is active and healthy, still works (positive identity all wrapped up in his ability to earn an income), and is relatively an all-around content man. The radiation/hormone therapy did a number on his ability to perform sexually. ED has been attempted to be cured with common medications, little blue pill as well, however the side effects were too dangerous for him. You can see where I’m going with this, can’t you? 👀
Our love is strong having endured and thrived during many, many difficult times. So, while many would consider being in that rare 3% a cause for celebration🎉 we know this will be a challenge…one we hope we are up for…No pun intended☝🏼☺️
We just had our first small snowfall, the temperature has plummeted to below 0 for 2 days now and I am SO hurting it’s crazy👎 I wear double socks, double shirts, move slowly so as not to jostle any of my parts…and that’s inside! My heat is cranked until Hubby, son and daughter-in-law start pulling out their summer clothes🤔 So, I turn down all the heat, let the wood stove get cold and wrap myself in blankets☃
Sure sucks to be me sometimes LOL
Yet I always have this little voice in the back of my mind that tells me we are really made of steel. Unbreakable and strong, no matter how much battering our minds and bodies receive. My own past has proven that fact to me many, many times.
When I look way back to my beginnings, it strikes me that even though I had major shitty 💩 beginnings that lasted til I was 25, I turned my life into something beautiful. You’d think abandonment, constant physical and mental abuse, drug abuse, juvenile detention, rapes and just the everlasting violent nature of my life would have shattered me to beyond repair. I was determined to rid my life of all that crap, and I did.
I’m not saying I didn’t have major issues with all that, especially with all the wasted years fighting my own tender heart in order to avoid any further pain. Wasted effort, wasted time and energy all that, trying to be something you’re not.
Finally realizing and accepting that life really is unfair, I had to make the most of all those hard lessons learned, gave myself time to learn trust, accept love and, above all, give love. I became convinced me that I’m not shattered, just cracked😜
All my pity parties are accompanied by upbeat music to feed my true essence. Feeling sorry for myself and feeding that despair with sad music just delays the inevitable: I will get over it, this momentary feeling of doom and gloom😭. Eventually, the pity dissappates and my mind/heart starts groovin’ to the beat.🎶
Then I start to sing along,🎤, much to the despair of those within earshot LOL
Oh well, better to hear me sing and see me try to bop around to the tunes than to hear me moan, groan and cry I say.
There are some overlapping symptoms with Fibro and adult ADD. Hypersensitivity is one, diminished attention span is a BIG one and impaired concentration along with the ever wonderful chronic sleep disturbances.
As an old, somewhat decrepit adult with ADD, (no, we do NOT outgrow it, we have learned tricks to deal with most symptoms), living in my mind is mainly all fun and games. Living in this Fibro body is not fun and games. See the problem? Which would be a major issue for some but for me it has a surprising and kind of welcome benefit: Fibro pain has all but put a halt to my never-ending struggle with impulsivity. Because of all the pain it is damn near impossible to follow a lot of the adventures that suddenly occur to me as a great, fun idea😄 This body just cannot follow through, and pain is an excellent way to get my attention and my head out of the clouds (or out of my ass some would say hee hee hee).
Fibro fog and ADD people cannot remember stuff at will. I have never been able to pull specific memories out of my head when needed, even when I was taking ADD meds. That particular executive function is just not available to me. Needless to say, as a family we don’t sit around playing “remember when” LOL
I could bore you with more comparisons, which I most likely will in the future as they occur to me, if I happen to be on my iPad…and can keep my train of thought going long enough to write it down…oh look, my cat is doing something cute!
I have a sex drive somewhere but the libido seems to be malfunctioning. Sexual pleasure and desire come from the brain, which is usually very busy coping with all the crap going on in your body.
It is truly a wonderful thing when sex actually happens, good sex is a freakin’ miracle!
I don’t really believe in miracles and sex is pretty much part of nostalgic things to look back on LOL
Well, yesterday I had high hopes, so sure I’d get lots done if I paced myself properly.
This is what I did:
Washed and dried the dishes, cleaned stovetop and burners, swept, cleaned wood stove then fired it up for the day, did 2 loads of laundry. I quasi danced my way through the kitchen stuff, the wood stove stuff was done sitting down, took breaks while laundry washed and dried. Doesn’t sound like much, right?
It was noontime when I felt the crushing weight descend upon my shoulders, pain radiating up my neck. I was in rest mode at the time, waiting for the first load of laundry to dry so I could fold it and put it away. Which I did anyway, and by the time the second load was ready to be folded and put away, my head was wobbling so much I must have looked like a Bobble-head toy. Still, I had all that sleep and enough giddiness to feel joyous.
By the time I lay down on the couch it was a full-blown, all consuming flare up. Can you hear me swearing like a sailor on drunken leave?
So, I ask you this; does pacing yourself really help? I think not. Seems to me it’s just a waste of relatively pain free time, resting when you could be getting something done.
Conclusion: I will no longer try to pace myself…waste of my time and energy.
Last night I slept 7 1/2 hours, woke up this morning somewhat disoriented after having slept that long. Other than some mild pain in my lower back and hips, I feel so 👀!
Now, I’m trying to pace myself instead of immediately attacking that long, long list of stuff I need to get done. You know what I mean.
Usually, in the momentary pauses between flare ups, I throw myself into a project/chore, going as fast as I can before my temporary energy runs out and the momentary ability to ignore the dull, slow pain build-up becomes unmanageable.
As an experiment on my part, I’m going to listen to the “experts” and try that “slow and steady wins the race” deal. We’ll see if they are right…will I have an entire day of pain I can ignore or will the pain take me down like a ton of bricks after a small amount of time as usual?
Ordinarily, I am happy as can be if I get one chore completed before I have to rest. Compared to before, with NO chores done because of the incessant, debilitating pain and fatigue. But now, who knows how much I can get done!? Can you tell I’m excited 😜
If they are correct I will be more than happy to mend my ways LOL
This pic was taken at the end of a wonderful visit with a brother and his wife that I hadn’t seen in 5 years. Some things are worth the pain, it’s all a pick and choose your moments. I am leaning on hubby, who’s partial shoulder you can see beside me. He literally was holding me up. But that is joy on my face, as love for my brother is totally worth the effort it took to hide the pain. I believe an Oscar is in my future LMAO
I speak my mind in my blog, very much like the old fashioned diary all the young girls used to have. I link it with my Twitter feed but not my Facebook feed. Wonder why? Because my FB is crammed with family members, all of whom say “helpful” things, like “suck it up”, “keep smiling”, take malanomin for your insomnia, it’s all a state of mind, etc. Etc. Etc. Blah, blah, blah.
To which I can only reply: