Gotta Laugh, Right?

I wouldn’t believe it unless I had experienced it…and guess what? I did.

I had to return to the hospital today to have my cast cracked open for flying. It took me half an hour to get from our villa to where we could catch a cab. Mum had bought a stool so I could sit on it to climb over the different size steps all around the villa. Hop, hop, sit, slide legs around, push myself back up, hop, hop, etc.

Got to the hospital and the surgeon was late again (yeah! I know! Doctors, right?) Then they had to saw into my cast – OMG! My leg is still swollen underneath. I screamed more from this little procedure than when I broke it. You know those sticks doctors use to look down your throat? I bit through 2 of them, trying to contain my pain.

Then it was ‘wait for meds and the report’ time. In total, it took 3 hours at the hospital despite having an appointment and the hospital calling me 3 times during the day to make sure that I was attending.

Finally, Mum and I hopped into a cab, via McDonalds, to go home.

We arrived and it was totally dark. I couldn’t even contemplate the path in the dark. The (wonderful) taxi driver and Mum carefully followed the pathway to find out what was wrong. Mum was sure she had left the lights on for our return. It seems we were out of electricity.

We phoned our host 3 times (except I had saved the number wrongly and we were calling our tailor!) I couldn’t eat any dinner because I was afraid that I would need to go to the toilet and wouldn’t make it in time – it really is a long way from the front to our villa using crutches and a stool.

Finally, we got through to our host’s girlfriend. She doesn’t drive and had to find a lift over to re-fill the electricity.

Back at the villa now – all I want to do is click my heels together and say ‘there’s no place like home!’

WARNING – Venting to Follow

I am currently in Bali – lucky me, right?

I scrimped and saved for 5 years so I could have 4 weeks of warmth, massages and relaxation. After 5 days, I fell and broke my ankle and leg – go me! Now I have to return home to have an operation.
These things happen, right?

This is not what has me pissed off (at least, at the moment).

I have been a member of a particular fibro site on FB for at least 2 years. I post pertinent information, answer questions when I can and so on – you know what I mean. There are also a variety of other types of posts from members, like

pic 1

and

pic 2

and

pic 4

and

pic 3

***names have been removed to protect identities

You get the idea, right?

So, today (after being blocked by FB for a month (long story but it involves this article) which explains why you have not heard from me) I posted the following:

flamingoes 1
TAKE ADVANTAGE OF MY BAD LUCK!
$1500 ONO

I have a fabulous 3 bedroom villa in Bali until August 23rd but (lucky me!) I have just broken my leg and have to come home.
So…does anyone want a cheap holiday in Bali?

  • Situated on a quiet street (Jalan Kresna), right on the border of Seminyak and Legian.
  • 3 bedrooms – all with their own bathrooms and king-sized beds!
  • Fabulous private pool – and we’ll leave you all our pool lounges!
  • Lovely host – Benjamin.
  • WIFI
  • Walking distance to most places (if you have 2 legs):
    • 2.2kms to Bali Deli
    • 2kms to Double 6 beach (via Jalan Arjuna (Double 6 street))
    • 2.1kms to Carrefour

The villa is advertised on AirB’n’B if you would like to check it out

DM for any further details.

It was deleted.

You would think that there might be some compassion for a fellow fibro sufferer; but no! the post had nothing to do with fibro so into the ether it was sent; despite the last four approved posts (above) not really associated with fibro, either.

20160802_162509Now, I am probably over-reacting but I am sitting in Bali besides a gorgeous pool that I cannot swim in, I am about 10 minutes away from some absolutely fabulous bargains but I cannot go shopping, I saved enough money to have a massage everyday but, guess what? I can’t do that either. I am stuck either on a lounge or in my bed at my villa with my mother (who has her arm in a sling after a shoulder operation – I was supposed to be looking after her), her partner (who is legally blind and more than partially deaf) and my uncle (the last man standing!) So I’m feeling pretty hard done by – wouldn’t you?

As such, and I know that they don’t give a shit, I am no longer a member of that group.

If you feel like venting today, please feel free to do so in the comments below – just let it all out!

P.S. Anyone want a cheap holiday?

 

Escaping from the Cold

There’s only 6 weeks until I escape to Bali for 4 weeks and, of course, I’m a little worried about the travelling.

One of the people, from a Facebook group that I belong to, just went to Jamaica for two weeks then spent 5 days in L.A. She, too, wasn’t sure how she would cope with Fibro and travelling.

Her travel advice-

♣ Ask your travel agent to request disability assistance. We had quite a few change-overs at different airports but, thanks to the request, there was staff waiting with a wheel chair or a golf trolley to take me around airport. I don’t usually need a wheelchair but waiting in line to check in, or waiting to go through customs or security can take a long time and having the wheelchair made a huge difference. It even meant getting through was quicker as the disabled are given priority. Also, getting from one side of the airport to another was made a lot easier. The staff knew the layout of airport better than me and in all honesty there’s no way I could have walked that far and still caught my flights on time. Some airports are massive!

♣ I’m not sure how to do it but I saw a lady on my flight who had problems with her legs and had reserved seats to put her leg up on. If you can, try to get seating that allows leg space. Fibro is painful enough so having space to move your legs, stretch, etc makes a difference.

♣ We flew Qantas to and from the States and then American Airlines. The differences in seating space was surprising. If I had of known in advance, I would have paid extra for ‘premium economic seats’ on American Airlines. Sitting for hours in bad positions, unable to move or stretch triggered my pain. It’s worth paying a bit extra, if you can, for comfort as discomfort can have a domino effect.

♣ Being tired from travelling, in pain and arriving in a foreign country in the middle of the night can be very disorienting under the best conditions. Try to make things as easy for yourself as you can. I pre-booked shuttles to hotels in advance which worked out ok at one location, but when we arrived in L.A. I felt so unwell I couldn’t think straight let alone try to find the shuttle stop. We ended up paying for a cab to hotel simply because I wasn’t in the right frame of mind, in too much pain from the bad seats on the plane; and too tired. I have since learnt that I didn’t have to pre-book shuttles as you can pay on the spot and, sometimes, the cab works out cheaper!

♣ If using AirB’n’B to book accommodation let the place know you have mobility issues and make sure the dwelling is easy to access. I had to cancel our accommodation on arrival as it was physically impossible for me to access the stairs up to the residence and the cliff it was located on would have been too hard to walk up every day (photos of location and descriptions were misleading!).

Blue-LAgoon♣ Plan rest days into your schedule. It can be hard when you’re on holidays and wanting to see as much as you can but the best way to avoid a flare is to pace yourself. I made sure that after a really busy day we’d have a lazy day. Also, try to pick one or two ‘must do’ things. For me, it was swimming in the Blue Lagoon in Jamaica. It was physically hard to get to the location but I managed it and we spent about an hour swimming. I was happy as I’d accomplished the one thing I had my heart on. Because of the limitations of Fibromyalgia you may not be able to do all the tourist-y things or activities others do, but if you pick one or two ‘must dos’ for your trip, you’ll feel great when you do it and any other activities you manage is a bonus!!

So, with this advice in hand, I’m off to relax by a pool with a freshly squeezed juice.

Miles to go [While] I Sleep

Last night, I went to bed at about 1am. This afternoon, I woke up at 1.45pm. That’s almost 13 hours sleep!

 

Since I’ve been back from Bali, the hours of sleep I have been having have been increasing steadily.

Now, don’t get jealous – I don’t wake up feeling refreshed; in fact, I think I hurt more than ever. I wake up a number of times and try to move but it hurts so much that I end up falling back to sleep. I really don’t know what I’m doing while I’m asleep but…

That is the way my bed looks before I go to bed…
And this is the way my bed looks when I wake up!

You know how sometimes we say that we wake up feeling like we ran a marathon? Maybe I am!

Every night I take 150mg of Lyrica (I don’t think that helps me sleep as I take the same amount in the morning) and just 2mg of Valium, which is supposed to relax my muscles enough for them to rest while I am sleeping. I guess that’s not working.

So I really have no idea why I’m ‘sleeping’ so much. I do know that I keep putting off my bedtime because I really don’t want to wake up…in pain.

After All…Tomorrow is Another Day.

 

So, it’s finally hit me…I’m home from Bali. Duh! you say, but I was able to stay in my little fantasy land for a whole week.

Despite coming home to: two telephone bills (home and mobile), a car registration notice, an invoice for three quarters of body corporate fees, an impending hospitalisation to withdraw from codeine, the spectre of a gallbladder operation (then disappearance of aforementioned operation), the new threat of a lesion on my liver, and an unexpectedly high bill from my handy-man; I was somehow able to hold onto my dream of returning to Bali for a year. Forget Eat, Pray, Love – it was just going to be Love, Love, Love!

WHO AM I KIDDING? For some unknown reason, today it hit me full force that I’m home and, most probably, staying here. I don’t know why it was today – nothing huge happened; but it slammed into me (kind of like those trucks that hit us during the night so we wake up in so much pain) – I’m on a disability pension. Yes, it is cheaper to live in Bali. Yes, I could rent out my unit. But I would still need to return every 3 months to continue receiving my pension, and airfares are not cheap.

This ‘little’ dose of reality brought back all the other stuff (above) that comes with being at home and, all of a sudden, I am overwhelmed. Too much, too quickly!

My reaction is a quick visit to the darkness of depression…

STOP! Wipe those idiot tears. You need some control!

I can’t control any of the bills or medical hassles so my antidote is to get some control over my surroundings – 8 shelves of books going to friends or the Op shop, 2 suitcases of clothes I don’t wear (but I might one day) going to be stored in Mommy’s garage and 4 bags of trash. There is stuff everywhere (I can’t do it all in one hit – I have Fibro, remember?) and I’m unhappy about going to bed, knowing that all this stuff will be waiting for me in the morning; but my exhaustion (and gravity) is dragging me down. So, now, not only is my head a mess but, so is the house (more so than before!)

But, as Scarlett said: I can’t think about that right now. If I do, I’ll go crazy. I’ll think about that tomorrow.

 

P.S. The clean basket of laundry is still sitting on the floor of my bedroom.

P.P.S. And, maybe, I can still work out a way to Bali…

 

You’re So Vain

 

So, when you read about me getting botox in Bali, was your first thought ‘how self-involved?’ Guess again, people…

Most common locations of trigger points in migraine sufferers.

Scientists at the University of Granada have confirmed that injecting botulinum toxin (botox) into certain points named “trigger points” of the pericraneal and neck muscles reduce migraine frequency among migraine sufferers. University of Granada researchers have identified the location of these trigger points – which activation results in migraine – and their relationship with the duration and severity of this condition.

Headache is a universal experience. At present, there are more than 100 different types of headache and one of the most recurring ones is migraine, which affects approximately 10-12% of the population. And once again, women suffer more than men (being three times more common in women than in men). When migraine becomes chronic (occurring more than 15 days a month), it can disrupt patients’ daily life in a great degree.

This research study is one of the three studies that have been conducted by Juan Miguel García Leiva -a researcher at the University of Granada Institute for Neuroscience “Federico Oloriz” — and coordinated by professor Elena Pita Calandre.

Trigger Points in Migraine Sufferers

In the first study, researchers examined a sample of healthy subjects and patients with a diagnosis of migraine (any frequency), and analysed the presence of trigger points and their location, many of the explorations resulting in a migraine crisis. The most interesting findings of this study were: 95% of migraine sufferers have trigger points, while only 25% of healthy subjects have them. The most common locations of trigger points are the anterior temporal and the suboccipital region, both bilateral, of the head. Furthermore, researchers found a positive correlation among the number of trigger points in a patient, the number of monthly crises and the duration in years of the condition.

Subsequently, researchers conducted another study with 52 migraine sufferers. Over three months, patients received a weekly subcutaneous injection of 1mL of a local anesthetic into their trigger points.

After the injection of the anesthetic, 18% of patients experienced a 50% or higher reduction in the frequency of migraine crises, as compared with the basal period. Additionally, an 11-49% reduction of frequency was observed in 38% of patients. Two thirds of the patients treated reported to feel “better or much better.”

Few Side Effects

In the third study, 25 patients with chronic migraine were injected with 12.5 doses of botox into each trigger point twice, during a period of 3 months. Frequency (main variable), intensity and scales of migraine crises were recorded one month before and one month after the treatment to compare the changes experienced. In addition, side effects were also recorded during the experiment, and they were found to be mild and temporary.

After the injections, the most significant decrease in crisis frequency was observed at week 20. Similar results were obtained in those crises labelled as “moderate” and in the frequency of analgesic use by patients.

García Leiva specified that this treatment “is not a first-choice treatment for migraine sufferers,” but it can only be applied in patients with chronic migraine who have tried several treatments with poor results, and who show peripheral sensitization of muscles. Recently, the Foods and Drugs Administration (USA) has approved botulinum toxin as a therapeutical drug for the treatment of chronic migraine.

So when I have established my Bali Fibro Haven Retreat, I’ll be organising trips to my now favourite doctor for all my guests, as well as yoga and meditation sessions. I’m willing to embrace all treatments that may help us.

 

Source

The above story is reprinted from materials provided byUniversity of Granada, via AlphaGalileo.

Note: Materials may be edited for content and length. For further information, please contact the source cited above.

 

Home vs Bali

Remember yesterday, when I left dinner early because my head hurt from all the noise and heat? Well, I got home and took 1000mg of paracetamol (remember, no codeine for 5 days! I had hardly taken any in Bali). Ha! Like that was ever going to touch my pain?

By 10pm, I was in a state of major agitation (slight understatement!) – I had tried my heat pack on my neck with the cooling gel pads on my face, then a frozen eye pack, then some more water (maybe I was just dehydrated?) I was nauseous with the pain, and feeling hot then cold then hot. I took some anti-nausea tablets – almost threw them up. And some Valium – ditto there. I was lying on the couch and I couldn’t move because every movement hurt my head and neck and shoulders. I was literally becoming delirious with pain.

So, I called my Mommy, and I was hardly coherent (so she tells me).

‘Forget the no painkillers. Take some Panadeine Forte now!’ she said. See? I couldn’t even make that decision for myself by this stage. Then she came over (good thing she lives only 15 minutes away) and put me to bed, and rubbed my head and shoulders (softly) until I fell asleep (what a good Mommy!)

‘Good thing you’re not living in Bali,’ she says.

I reply (I can finally speak now), ’This doesn’t happen in Bali!’

I woke up this morning feeling a little more human, although the headache was still there, so I took two more Panadeine Forte. Two hours later, I could function again.

So, now I’m not sure how I’m going to stop the codeine – my doctor said some people need to be hospitalised – but I have definitely begun my search for a villa in Bali!

Nooooo!

 

It’s the last day in Bali – I leave tonight, with an extra suitcase filled with handbags (I bought too many (again!) – anyone in Melbourne interested in buying fake Jimmy Choo handbags (with matching wallets) in the latest Spring colours?), clothes for my

That’s no make-up! Those are my new eyelashes! (Can’t do much about the bags under my eyes)

nieces, nephews, Mommy and I, and all the Bali touristy stuff that my heart desired (Mommy has been VERY generous and she was intent on giving me the best holiday EVER!); with fuller lips, luscious eyelashes and a tan; and a yearning to return very shortly (I have started my investigations into a long-term lease already!)

You will be happy to know that today is filled with massages and sun-worship (with the requisite 30+) before leaving for the airport (Oh, it hurts to even write that!)

Oh, and I also found the Aeroguard!

 

Bali Fibro Haven

Just one more sleep and I have to go home…not happy, Jan! I am seriously thinking about moving here – there has been a lot less pain and therefore a lot less pain killers; the warmth is wonderful; the lifestyle is relaxed, and it is really cheap to live here. I found a gorgeous 3 bedroom, 3 bathroom villa with pool and maid’s quarters (and fully furnished) for about half the price of my 2 bedroom (no pool) unit at home – and I’d need a big house because I am sure that my entire family would suddenly find the time to visit me (OFTEN!)

 

Maybe I could open a Fibromyalgia Retreat and organise yoga/meditation sessions, Botox injections for TMJ and loads of massages. Anyone want to come?

I figure (with Mommy’s encouragement) that I had better lease here first for a longer period to see if I could really handle being away from family and friends – so when I get home, I’ll be doing some heavy-duty research!

Our last days spent in paradise are being taken up with more massages, a manicure and pedicure for Mommy (I can’t handle them – they hurt!), my eyelash extensions (finally!) and some last-minute sun worship – oh, and a couple of cocktails!

P.S. I won’t miss the #%!!ing rooster!

Bali 7

So this was the plan for today:

  • Wake up (then wake Mommy at 9am)
  • Walk (15 mins) to Bali Deli for brunch
  • Check out fat lady store (about 2 minute walk from Deli)
  • Get eyelash extensions while Mommy has massage (next door to fat lady store)
  • Buy lunch food at Bali Deli and return to Villa (by taxi)
  • Rest and relaxation ‘til about 4pm
  • Get taxi to bottom of Double 6 street
  • Walk/shop for an hour (at most!)
  • Dinner near Legian beach
  • Home by taxi

This seemed liked a nicely-planned, nicely-paced day, with about 1¼ hours of walking for the day – guess what? Didn’t happen!

That luggage under my eyes ain’t going anywhere!

I woke up at about 6am (I am getting about 6 hours sleep a night but it is just not enough. My body needs to sleep properly (somehow). I keep thinking that, if I get exhausted enough, I will sleep properly – not working!) I read my book, fiddled about on the computer then got in the pool. I decided not to wake Mommy – it’s her holiday, too and if she wants to sleep, I’m going to let her.

When Mommy woke up, we walked to Bali Deli (as planned) and had a wonderful brunch of scrambled eggs on toast with exceptionally crispy bacon, accompanied by an apple-orange-carrot juice.

Then we walked to the fat lady store, where there was absolutely nothing for me and Mommy tried on heaps – but it looked horrible. Very disappointing! We had high hopes for that shop.

So, so far, the plan is not too off track…

We were so disappointed that we walked to the fat lady store we had discovered the previous night (probably another 30 minute walk there and back) but, because I hadn’t woken Mommy, it was almost midday and so, so extremely hot!

We didn’t find anything worthwhile there (at least at a price that we were willing to pay) either. So a walk back to the massage place for a one hour massage at $7.00 – gotta love Bali!

Then the plan went quite well for a little while, with lunch IN the pool because we were so hot and it felt decadent. But our rest and relaxation only ended up being about 1.5 hours (including making lunch) because we had started the day so late.

Next, we got ourselves ready and caught a taxi. The taxi driver, about half way through the trip, stopped and told us he had to pick up some-one at the airport – this was as far as he could take us. What the…?

Now came a decision: did we catch another taxi to where we wanted to go? Or, was the universe telling us something and, should we walk around these shops for a while? Well, what did you think I was going to do? SHOPPING!

I found a wonderful bead shop, where, after searching the highs and lows of his store, the shop owner (Rudi) is making me gorgeous wind-on wire bracelets (ie: will fit everyone) with purple shells, purple and silver beads, and a silver butterfly on the end. But firstly, he had to make me a sample so I could make sure that it was up to my exacting standards – so we were to return after dinner.

Then, Mommy and I continued walking. About 10 minutes later, we found another bead store with the exact purple bead I wanted in the centre of the bracelet. I bought one of their bracelets, left Mommy where she was and started back to Rudi’s store to show him what I wanted.

On the way back (and how did I miss it the first time?), I saw a beautiful silver pendant, inlaid with mother of pearl, in the shape of a butterfly. Oh my! perfect for the rubber chokers I found (with a magnetic clasp so we can open and close it without hurting our fingers!) But, I was getting so tired that I knew my brain wasn’t working clearly enough, so I decided I had to return with Mommy (when we came back later) to do the bargaining and money stuff (I’ve been getting really confused with Bali money (too many zeroes) so I refuse to buy anything without Mommy being around to double-check my calculations!)

Now, where was I? Okay, I continued to Rudi’s store, dropped off the beaded bracelet with the perfect bead, turned around and walked back to Mommy. By the time I got back, all I could do was signal to her that I needed a drink FAST! Mommy, being the perfect travelling companion and caring soul, already had one open and waiting for me. I sat down on the footpath and drank the entire juice in about two gulps. My ankles and legs were killing me (have you seen Balinese footpaths?)

We decided (FM decided it for us?) that we should just stop for dinner. We couldn’t be THAT far from the beach restaurant, right? Wrong! We couldn’t even find the beach! So we stopped at another restaurant, which looked rather appealing…

After dinner, we decided we should catch a taxi and have it wait for us at each of the stores (taxis in Bali are not the same as at home – it only cost us $4 to stop at the two stores (LOVE the sample bracelet (Stay tuned for the Bali Collection on my shop) and order before returning home – umm, where I had to run inside (despite my exhaustion) to get to the bathroom as, it appears, that dinner did NOT agree with my tummy!

All in all, quite an eventful (exhausting and not-to-plan) day. Perhaps we’ll stick to the plan a little bit better tomorrow…

******LIP UPDATE******