Chronic Illness, Count Your Blessings, Fibro, Fibro Life, Fibromyalgia

Life-Belts And Lead Weights.


There are things that help in the battle with fibro, and there are things that hinder. 

Some days I’m drowning, and some days I’m a veritable olympian swimmer.

This is my list of some of my own Life-belts and Lead Weights. What are yours?

(I keep trying to space the next line lower down, but for some unfathomable reason, despite reporting that it has successfully updated this post, it sodding well hasn’t. Please pretend there is a suitable gap before both the Lead Weights and Life-Boats headings!)

***************************************************************

Lead Weights.

Stress. Not just the usual mental and emotional stressors, I react badly to physical stressors, like pushing myself when my body is screaming in protest at the activity. Or being too cold, or too hot, or too tired. Or getting a bug (not the multi-legged/winged kind, the viral or bacterial kind).

Various Medications. Binders, fillers, additives, who knows? It could be something as minor as one manufacturer using a different product to another manufacturer for cleaning their machinery. I react badly – sometimes REALLY badly – to generic versions of branded products. Or to different formats of the same product from the same company. I react horribly to a huge number of medications that are ALWAYS considered “well-tolerated”. (Apologies for resorting to caps for emphasis, I seem incapable of managing to use the bold, underline and italic buttons without my cursor shifting position. The examples above were clearly a fluke. And then there’s the bar with My Site, Reader, Write, etc, that keeps moving down to obscure what I’ve just written. Ditto the Preview, Publish, Save Draft bar. Advice, anyone?)  The list of “Do Not Prescribe, Intolerant” meds in my GP and hospital notes is never-ending and continually growing. Sigh.

Processed Foods. Chemicals, additives, hormones, anti-biotics, E numbers…….read The Great Food Gamble, by John Humphrys, for a clear insight into what modern farming practices do to our food.

Tap Water. I kid you not. I have to drink bottled water. There was a time when I also had to wash and cook food in bottled water, too. These days, since my hypothyroid issue was addressed with T3 (I don’t convert the standard T4 (thyroxine) into the active form (T3, tertroxin, liothyronine) that is used by the body), I can just about tolerate drinks made with Maxtra filtered water, and food cooked and prepped in same. If I’m being really sensitive, like during a flare, tap water even irritates my skin if I wash or bath in it.

Judgement, Intolerance, Arrogance. Not just doctors and consultants, non-medical people, too.

Some OTC / Natural Medicine Products. Binders, fillers, additives, sometimes just the active ingredient. Weird. I can almost never take powdered tryptophan, which purports to be pure, yet can tolerate it in cottage cheese. I can’t take GABA (Gamma Amino Butyric Acid, a neuro-calmer) or the calming amino acid theanine without experiencing agitation and palpitations instead of serenity and calm. Theanine is high in ordinary tea, and is very likely part of the reason we turn to “Tea!” in any crisis. Again, I seem to tolerate drinking tea.

Bad Weather. Gloomy, grimy, grim grey days drag my mood to the same description. Cold weather makes me want to hibernate. I’m a sunshine girl.

Bad Relationships. No explanation required. Self-removal from situation definitely required in name of sanity, but impossible in cases of family. Bummer.

Flares (please see “Flare You Go Again…” post.

The General Election Results. Another 5 years of Conservative cruelty headed our way.

**************************************************************************************

Life-Belts.

Ben. Love, support, faith in me, understanding, communication, practical help, cuddly bits, sexy bits (blush)

My New Friends Here.

Music.

Writing.

Reading.

My iPad, my iPod.

Movies, TV Dramas, Comedies, Stand Up Comedy, Informative Documentaries, Talent Shows (esp singing, dancing).

Helping Other People.

My Cats.

Sunshine.

Beaches.

Mountains.

Lakes.

Travel, Holidays. Except that the logistics of lugging med supplies and walking aids has now made this impossible. I haven’t been away anywhere for 6 years, and that was the first time for the preceeding 5 years, too. Ha! So that’s once in 11 years. I have Location Envy for all of you who are lucky enough to live near a beach, mountain, lake or other area of natural wonderfulness.

Fluffy, Fleecy Throws.

My Sheepskin Slippers.

My V Pillow.

My Heated (or cooled) Water-bed.

My Lightbox. Stimulates all kinds of hormone production and release, and an essential when I can’t face opening the curtains.

My Natural Medicines. Aminos, vitamins, minerals, hormones, essential oils, and others. I’m definitely worse without them, and it shows in my monthly blood tests, proving the effect is not placebo. I even reversed my raging osteoporosis using two vitamins that every Dr I know told me did “nothing”. I have the bone density scans to prove it. Some of my docs suffer so badly from cognitive dissonance that even with the scans they can’t accept it.  Others are just happily amazed.

My GP. Total saint. Falls into latter category above.

Mineral Water. Every process in the body works best with optimal hydration. I drink around 2 litres of plain bottled mineral water a day. I never drink the fizzy water, or the flavoured stuff. I actually like plain old, flat old water! It’s not difficult to do when I’m having to swallow so many meds and supplements several times a day.

My heatpads.

My ice-packs (migraines).

Some Of My Meds. I wouldn’t want to be without my migraine meds, or my anti-emetics, or my steroid hormones, or my painkillers, or……ok, I guess I mean ALL my meds.

Counting My Blessings.

There are probably more, but the fog is swirling in today. B had huge trouble waking me up this morning. Not sure why. Feel really quite unwell.

Advertisements

31 thoughts on “Life-Belts And Lead Weights.

  1. Thanks for visiting my blog and getting me to think about the life belts and dead weights in my own life. One of the things aside from exercise which I keep hearing about to improve your well-being is helping others. That has been one of the secondary benefits of blogging because in addition to encouraging each other withour writing, we also help carry each other’s burdens which has such a beneficial effect all round xx Rowena

    Liked by 2 people

    1. You’re so very welcome! I’m feeling ridiculously flattered that you seem to think I’m thought-provoking. I hadn’t really thought about it like that 🙂

      Yeah, the exercise thing really pisses me off. I can barely make it to the bathroom, never mind exercise in the way they mean, “Start with something easy like a 20 minute walk,” they say.

      If I could walk unaided for 20 minutes, I wouldn’t need my walker-trolley to collapse onto after 3!

      I do, however, have a vibration plate machine. It has a side to side see-saw action, so even if I can’t move my legs, they get “walked” for me. It helps, but only if I can make it downstairs, and then I’m usually wiped out by the exertion (pathetic!) and am stuck on the sofa for the duration. I’m doing well if I manage to use my “wobble board” once a month. It has very good handles on it which I support myself with. I cling on for dear life and let my legs be moved.

      Telling anyone with exhaustion/ fatigue etc to exercise is like telling a leper to adopt a better skin care regime.

      And you’re dead right, helping others definitely helps us in the process. I feel so useless otherwise. Useless, pathetic, feeble, in-valid. Writing helps in so many ways. It’s even better when lovely people come along and tell me they enjoy my blog!

      Thanks again, Rowena 🙂 I really, really appreciate it 😀

      L. X

      PS Are you Rowena or Ro?

      Like

      1. I have no idea – this stuff baffles me! I tend to work on the theory that if I can’t get online anywhere from any of my devices, it’s my router (happens quite a lot), if I can get online but one site doesn’t work, then it’s the site. Yesterday, I kept getting that “can’t find the server” message, but could get everywhere else online, including other WordPress blogs, so I figured it must be something to do with your blog, specifically. That’s the only explanation I have. Hope it gets sorted out. X

        Liked by 1 person

      2. My router drops out often. It’s downstairs, so B gets a yell of despair from me, and goes downstairs to re-start it for me. Usually does the trick, thankfully, but I really need to get a new one. X

        Liked by 1 person

      3. Maybe the server that’s responsible for international connections? Sorry, I’m a bit useless with tec stuff. Have you checked to see if anyone else is having the same problem as me with accessing your pages? Maybe it’s the UK server that’s down……I really don’t know. I’m still getting new traffic on mine, so it can’t be the UK in general that’s the problem, or I wouldn’t be getting traffic and I wouldn’t be able to everyone else’s blogs. Didn’t you say this had happened before? How did it get resolved? X

        Like

  2. PS In common with other not-well people, my D3 levels have to be a lot, lot higher than the accepted, dictated upper normal levels. In fact, Big Pharma is SO worried that allowing everyone to take enough D3 will remove the need for numerous meds that they have recently had the reference ranges lowered to make sure compliant patients stay within a deficiency range that maintains their illness. The normal ref range when I started taking it in Feb 2013 was 75-200 nmol/l. Last year it was reduced to 50-100 nmol/l. I was up to 800 nmol/l and more, and felt better than I had done for years. One of my docs terrified me, and I made the mistake of reducing it. I put it back up to 10,000-20,000 IU a day, and stayed “above 300 nmol/l” (beautifully vague!) but having reduced again to *only* 10,000 IU /day for the last couple of months, my last test said my levels were only 142 nmol/l, which is miles away from the old upper limit of 200 nmol. So I’m back to upping it again.

    Ru ok? Have u fallen asleep, or have things got too bad for u to read this convo? I hope it’s not the latter! I hate the thought of you suffering so. Let me know when u can.

    Xxxx

    Like

  3. You’re so sweet. You say such lovely things 🙂

    Yes, I take bloomin’ shed loads. The trouble is that if you’re sensitive like we are, you have to a) buy pure powders or capsules, not tabs (binders, fillers, etc), and b) most of them require that you take them with food.

    -I’ve picked up on your lack of sunlight exposure – when did you last have yr Vit D levels checked? Vitamin D3 was/is a massive helper for me. It isn’t a cure, but your immune system uses it constantly, so do other systems in your body too – in fact, from memory, there are more VDRs (Vitamin D Receptors) in the digestive tract than anywhere else in the body.

    We use Healthy Origins Vit D3 at the rate of a minimum of 10,000 IUs a day. You can buy a tub of 360 x 10,000 IUs from my old faithful, iHerb.com (link somewhere in my sidebar) and if you use my personal discount code, BAB416, you get money off your first order, and I get brownie points, lol.

    My initial intake, once I’d stumbled across a then free e-book on my Kindle called Prescribing Sunshine, was around 80,000 IU a day. After 6 weeks, I got tested, and was barely in the normal range. The UK reckon we only need 400 IU a day to be fully healthy, and that’s bollocks. My levels went up and up, way past upper normal, but I take Vit K2 with it, and that actively prevents the Vit D toxicity that all my medics threatened me with – and reversed my osteoporosis into the bargain (note to self, must do post explaining this fully). Vit D3 makes calcium more available from your gut, and unless there’s enough K2 to send any excess blood calcium into yr bones (where it should be), you can end up with it being dumped into soft tissue instead. You need around 100mcg of K2 for every 10,000 IU of D3.

    Sending this now, in case yr falling asleep, or think I have! Xxxx

    Like

    1. I was vitamin D deficient and now take 10,000 units every day and my levels are now fine. Our minimum levels are about the same. My chiropractor (fibro specialist and the online fibro drs suggest 10,000 units a day too).

      Liked by 1 person

      1. Good. I think that’s a decent amount. Tessa, you need to check out Vitamin K2. I’ll probably have to do a post on it, because my typing hand is getting knackered with typing up the same thing over and over!
        D3 makes calcium more available to your system by increasing its absorption from your gut. High dose D3 can lead to high blood calcium, which is dangerous. K2 picks up any excess calcium in the blood and sends it to your bones and teeth, where it should be. I managed to reverse my 6 years old osteoporosis (result of them taking away my oestrogen with the breast cancer treatments), which had only got worse on the dr’s standard treatment of high dose calcium with a teeny amount (400 IU) D3 in that 6 years. It started reversing in 4 months on D3 and K2. You ideally need 100mcg of the MK7 type of K2 for every 10,000 IU of D3, and you should keep regular checks on your calcium levels, too.

        Let me know if you want a discount code for iHerb – it’s where we get all of our supplements from (well, about 95% of them) and I get brownie points if someone uses my code 🙂 – I’m not affiliated to them, I don’t sell anything, but I’m always happy to recommend products that I’ve used and gave worked for me.

        Last thing – keep your oil filled supplements, including D3 if you have it in that format (we do!) in the fridge. All oils will go off if exposed to light and heat long enough.

        Take care, Tessa. Nitey nite,

        L. X

        Liked by 1 person

      2. Hmmm never heard of K2. Can’t imagine why the chiropractor didn’t mention it. He sells stuff too although too expensive for me. He is the one insisted that I take 10,000 of the D3.

        Yeah send me the code I will check it out. thanks!

        Tessa xx

        Liked by 1 person

      3. Yes, surprisingly few people have! None of my nutrition books mention it, or only barely, and usually only as “Vitamin K”, which usually means K1, which is the blood clotting vitamin that they test babies for when they’re newly born. I stumbled across it in a Kindle book (also a paperback on Amazon) called Prescribing Sunshine, by M. Aziz, all about Vit D3. Then I saw it in the shortest Kindle book I’ve ever seen, called The Missing Link For Osteoporosis (or something like that) by a Dr. He just said K 2 was responsible for the carboxylation of Vit K2-dependent proteins, and that they had a huge influence over how our bones rebuild themselves, and that K2 is the instruction for any excess calcium in the blood to be moved into the bones and teeth (teeth are technically bones).

        If you’re buying your D3 from your chiro, I bet you’re paying a fortune for it! We use (and it def works, as reflected by my blood tests) Healthy Origins brand, again from iHerb. I pay $19.95 for a tub of 360 x 10,000 caps, so that would last you nearly a whole year 😀 The K2 I recommend is by Now Foods, also from iHerb, and it’s the MK7 type (Vit K2 is Menaquinone, which they abbreviate to MK – should be MQ, surely, but I think they went for the phoenetic). I get the 100mcg x 90 caps because that’s the only size they do, so you need 4 of those to match one 360 tub of D3.

        I have to say Tessa, it’s irresponsible if your chiro to NOT have talked to you about increased calcium uptake from taking high dose D3. How long have you been on it? You should really get a calcium blood test asap. Signs if high blood calcium include increased thirst, nausea, muscle cramps, and premature ageing – all of which (if you got them) you would likely put down to your diabetes and fibro.

        Ok. So the code you put in at checkout is BAB416.

        Let me know how you get on 🙂

        L. X

        PS Soz for any repetition – just spotted I’d already said most of this on the comment above yours. Also think I misunderstood about yr chiro and products – where do you get your D3 from currently, and what form is it? Tablet? Oil-filled capsule? Drops?

        Liked by 1 person

      4. I take the D3 in gel filled capsules usually, but occasionally it comes in a tablet. I don’t buy from the chiropractor. I buy it wherever it is cheaper and sometimes I use Puritan and Drugstore.com. I just restarted taking vitamins again and ones I find in research. I have only been taking the D3 in that amount for a few weeks. I will keep this email notification so I can check back if I need to. Thanks for all the info.

        Liked by 1 person

  4. Interesting read. It makes me feel awful for my negative posts lately haha. You have summed everything up so nicely. From what I have read, do you use more natural products/supplements than… non natural?
    I have Gaba in my cupboard I think – in powder form. It never did much for me. Maybe I will try it again. I don’t know what to try anymore. For the first time in months ai decided to take vitamins – and let me tell you that my stomach didn’t want anything to do with them! It explains my cramping and trip backwards.

    I am not responding to the medications that are meant to be ‘the best’ and ‘work wih minimal side effects’. My body has had a little shutdown.
    I’m so happy to hear that you have Ben supporting you in every way possible. It is good to have someone there who understands. I hope that one day I find the same. I also hope I can manage this all like you are – you are doing an incredible job.

    Also – lastly, I am not a sunshine girl haha. I love the grey weather. The rain especially. It helps with my nausea haha.

    Your comments on my posts and continuous support is really uplifting for me. I enjoy reading your work (:

    Liked by 3 people

Comment / Reply Here - Let Me Know What You Think! <3

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s