Well, it’s just gone 5.30am on Tuesday morning. Yesterday was a seriously busy day for blog posts yesterday. I could hardly keep up! I wonder if this means the Reader is working more efficiently now. I shall pop over to the forum thread later and enquire.
I’m feeling some internal weirdness. LOL. I don’t know how else to describe it, to be honest. It’s entirely mental, and I want to try and articulate it, hence my musing.
I survived the last 12 months. it was touch and go at times, but I made it through with the love and support of my little family here at home, a handful of very close and dear friends, the blogging community here, and sheer bloody mindedness at times.
But I survived. And now that a handful of significant dates have passed and I feel that the potential ordeal of them is over and done with – it’s like “what now?”
I mean, I’m 48 in a couple of months, I have physical disabilities, no car, I’m single, and my nearest friend lives 17 miles away.
And…………………for every bit of physical progress I have made, I have slid back with each flare up.
I need to remake my life. I’m just not sure how.
Chaos, Cats and Chronic Pain 
My heart and love go out to you. This is my number one fear of being alone. My physical fibro issues and migraines. i think that people like you who go it alone are so very brave… I admire it..I wish every day I could do it… I am always asking myself how could I do it?
but you are doing it… so much fucking props..and for reaching out and writing with honesty..
(here is where I am going to cringe, thinking you are thinking I expect a reply every time when I don’t..bc I ranted …please don’t..*cringing* so not about people I knew already..)
(I know we already talked about it tho..see how I overthink..)
so much love and hugs…CC
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CC, I’m not entirely alone, I have my little family here, my daughters and son in law to be live with me. But no other relatives that have any part of my life.
I’m wondering if I mis-phrased my post (probably lack of sleep) because I think everyone who commented is thinking the same way, and that wasn’t my intention to appear as if I am just me on my lonesome.
ps – stop cringing!! (((((hugs)))))
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Well, I just read all the wonderful comments here. What wonderful friends on here you have.
To me, I knew what you meant as well. I consider not having a significant other being alone, and I know I shouldn’t but I do. Hell, most days I feel alone as it is. I stay as I feel I am afraid I could not support myself due to my physical struggles and being on disability for bipolar…but even that would not stop me. It is the fear of the fatigue and the pain and the migraines more than anything.
You are lucky to have your family. My youngest will turn 18 this week and then in April. But the oldest is only 23. If we got along I more than likely would have been living with her or near, but she lives in my old home town. However, not having someone in my life I feel lonely. Like someone who is there when you are down. Kids, at least mine, never filled that…maybe they are not old enough. Anywayyy… I still think you are quite brave and I just love your outlook on things.
I also learned so much about FM reading thru just this post. I have asked my docs to see an endocrinologist for years! They tell me no. Even though I developed PCOS and feel it would benefit me greatly. I also have that trouble with my face. I put it toward my migraines,which also came in full force after my FM, although I had some intermittently prior. Thanks for just that knowledge.
And I promise no more cringing. 🙂
xxxx -CC
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I would ask your dr for a vit D test, CC. It really is very common in people with FM. And it’s such a simple thing to treat, but vit D plays such a big role in so many functions in the body. If it shows you are deficient, you then have more of a case to see an endocrinologist 🙂
xxx
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As a Fibro Friend I am right with you on this. Wonder if the forthcoming eclipse has anything to do with it? Ive noticed a lot of us get worse during big solar flares, perhaps because of the activity that causes all the electrical bombardment of the atmosphere that results in auroras. We are so susceptible to atmospheric change. Im still going twenty years on from diagnosis and have done things I would not have missed for anything in that time so allow yourself to feel this way without guilt (guilt on bad days is my bugbear) then say time up and do something totally self-indulgent. Just sitting in a garden listening to birds can help a lot if they dont get too strident. You are being rattled by the stress of the changes going on around you too so are actually doing pretty well! Gentle hugs. X
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((((Eunice))))
I’ve noticed this too. Just on a basic wet and windy day my pain levels are worse. I knew a guy whose trade in the RAF was all things weather and he totally disagreed that people could be effected by anything atmospheric. Silly man!!
My daughter’s boyfriend is going to paint my table outside for me, so I will soon have somewhere to sit at and enjoy the garden. We have old Horse Chestnut trees behind us, and occasionally get squirrels too, as well as lots of birds. They avoid my garden tho because of the cats LOL
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I can not even begin to imagine the pain and struggles you go through. Whilst my own mental illnesses and physical illnesses are no where near as bad or life effecting as yours, I often go through ‘dark days’ of thinking, what is the point, why am I doing this when I know I can’t, why do people even care… so on and so forth (Hence the little gaps in my blog!) and it takes a little while to get back into myself, I’d hate to be so far from people whilst going through it though, so my heart really does go out to you! I’m not just a blogger, I’m human too so feel free to email or whatever if you ever want a chat! (wafflingsofanopenbook@gmail.com) I will always be about 🙂
Much Love! ❤
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Oh bless you, Thank you 🙂
I’m a little concerned that everyone has misunderstood my post a bit. I suspect my phrasing is off due to lack of sleep 😦 But I’m not entirely alone, I do have my little family here – my daughters and son in law to be live with me. Altho no other relatives have a part in my life. And I talk to my closest (and nearest lol) friend several times every day by text.
It’s the getting back to myself bit that I am struggling with most tho, after last year and the horrendous break up and then my mum passing away on top of being so ill.
But…..onwards………..one day at a time 😀
((((hugs))))
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I can’t imagine what you go through, being alone is one of my biggest fears. I am so lucky in the scheme of things. Wish I could answer the question about remaking life, all I can do is say I am thinking of you.
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Thank you xx
I have just said to CC and Vicky, who also commented, that I’m worried my phrasing was wonky from lack of sleep. I’m not entirely alone – my little family here, my daughters and son in law to be live with me, and I chatter away by text every day with my closest (and nearest) friend. And I have my cats 😀
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Oh I understand wonky! Lol. Good to hear you are not entirely alone.
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I understood you were not totally alone but I think or I got from it when you said alone you meant no significant other and not having a car to get around makes it hard when your friend lives so far away. They (drs.) had taken my drivers license away for awhile (I fought to get it back and ongoing battle there) and it was the hardest thing for me. Even when I am ambulatory it still is nice to have that car. When I had the walker it would have been impossible without it (ok not impossible but harder) I have moved so far away from my family and friends and find that hard but when we bought this house lucked on to having great neighbors that I am just getting to know and feel so lucky for that. So you have done awesome and I hope you know friends are just a click away. Take care and 48 only means your getting better and life is good. I will be 60 this year and was 55 when first diagnosed with fibro it has been up and down but up right now. I already knew about it as my daughter had a car accident 8 years before and had it then was doing good then had a really hard delivery and has been having trouble since. My drs. here do not believe in fibro. That was long.
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😀 Thank you xx Yes, I have met some wonderful people here on wp, and you have all helped me through probably far more than you realise ((((hugs))))
Since I stopped working so many people have just drifted away, which happens, I know. When the shit hit the fan with my ex last year, I also lost my 2 oldest friends – one I had known since we were 4, but what came to light with both of them was something I couldn’t allow in my life.
My car…..was my lifeline. My FM symptoms started after a bump in my car, same as your daughter. But sadly, my car failed it’s MOT last summer and I havent been able to afford another yet. Each time I accrue enough money something crops up that needs to be paid for. My nearest friend doesnt drive and she’s self employed and works a lot. But it’ll all come good.
Since getting through Mother’s day (my mum passed away in the summer too) and a couple of anniversaries, I feel like I am poking my head above the parapet and not quite recognising my life. It’s a weird feeling really.
You really don’t look 60, you know. I thought you were around my age. What’s your secret and can I share it? 😀
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Well thanks for saying that I think it is more genetics. But I only wash my face with cold water most days. Use a sugar scrub 3 or 4 x a week and use the body butter I make to keep moisture in after I wash. I don’t dry my face I pat excess water as I want body butter to keep moisture in and that’s it. Thanks again though. Do you have a good dr. that helps with the Fibro? It is hard when you have so many things happening at once. My mom passed away last year March 21 so coming on a year and yup think about it a lot more right now. I tell my sisters “I just want more time to say she is driving me crazy”. We have our memories. The chronic pain is the hard thing sometime too much pain and I cannot sleep at night then I look 80 lol.
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A few good genes go a long way 🙂 I love body butter, but I have to be so careful because of my allergies 😦
Yes, my GP is great. My meds are now at the minimal as I prefer to use natural remedied even for my depression. My main challenge FM wise is to improve my strength and stamina again after all last years additional problems that kept me mostly bed bound. It isnt easy to do, especially as I havent even got the car to drive me somewhere where I might walk a bit more.
Oh sleep!! I can’t sleep even when my pain levels are reasonable. It’s the single biggest thing that causes me problems. When I havent had at least 5 hours in a row, I hurt more, I am weaker, and then I am fighting sleep all day long. It’s like hovering in a no-man’s land of extreme fatigue that just renders me useless. But I am going to call my dr again tomorrow and request more of the amazing zopiclone pills that are the only thing that seems to help, but she only lets me have a months supply every few months. But it’s awful isnt it, when you look in the mirror after no sleep. I’d be scared to meet me looking like that LOL
((((hugs)))) for your loss xx
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Yes I use zopiclone at night and I try to take every second or third night but even with them if pain is too high I cannot sleep and then like you said it is a vicious cycle. Not enough sleep more pain. Also I was tested a while back and they found I had really low vitamin D level so had mega dose for 2 mths and now take 3000 IU daily for maintenance and I think it has really helped as well as using my magnesium cream. I swear by my pain cream too. It really helps. My daughter uses too many meds and it scares me but she has so much pain and a 4 year old with autism so she does her best. I have been sending her my products to use and she said they do help a lot and she is tryingto cut back on the more powerful meds. Still Drs. here say no such thing as fibro they just haven’t found the problem yet. So they have gone from MS to parkinsons to Alzheimer and on and on . I just deal with it as I can tired of dr. and tests.
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The low vitamin D seems to be common with FM. I don’t know how they measure it outside the UK, but the normal range is between 75 and 150 here. When I was first tested for it about 3 years ago, my level was 7 ! I saw an endocrinologist and he actually helped write the NHS protocol for vit d deficiency, so I got lucky there. But he reckoned that the symptoms of vit D deficiency were identical to FM. I take 3000 iu a day and its took 2 years to come into the normal range. I have a friend who is a biomedical scientist and he keeps telling me to take more as my levels now are still in the low range of normal, and I could effectively be double it and still be ‘normal’.
I havent had much success with topical magnesium, but I do take a supplement.
FM does exist!! Have they read the research that has found structural differences in our skin? I’d print it off and shove it up their noses, I think.
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No seriously do you have a site I can go to. I would love to. Shove it up their noses.
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Let me dig out the link for you – shant be long 🙂
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k tks so much.
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http://guardianlv.com/2013/06/fibromyalgia-mystery-finally-solved/
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Tks going to check it out right now
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oh, there was also some research, that I havent got a link for, i’m afraid, about a vet, who was investigating an FM type illness in cats, and he asked for human volunteers with and without FM to give blood for him to study in an attempt to help the cats, and he actually found some kind of marker in the FM blood, which points to a blood test being developed at some point.
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Oh will have to find that one it would be nice to have a test all dr. would believe in and start working on it. My vision has been so blurry lately that is driving me nuts. So I haven’t really done a lot of driving because of that but still good that I can if I have too.
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I get blurry vision too sometimes. And one side of my face doesnt always work properly. I’ve had scans and theres nowt going on in my brain, so it’s all FM based. But if FM affects muscles, what is there to stop it affecting smaller muscles like in our eyes?
Yeah, I hope someone puts some serious money behind the research, it would make such a difference to so many people.
It’s gone 3am here, so I’m going to try and sleep again (((((hugs))))) and thank you for the chat 🙂
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There are other sites with the same research but they are on my pc downstairs. I first read about it about this time last year, I think, so the research has been around a while now
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Yes checking out all the different sites again . I quit checking when dr kept telling me it wasn’t real.
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