FLF #7 - What a flare up, bad day and pain looks like

I'm putting this video up not to gain sympathy but to demonstrate what people with lupus and fibromyalgia experience during a flare up. Please no disrespectful comments. I know I'm fat and I know this may seem like a whinge, but it truly isn't. People will only understand if they can see it with their own eyes. It's a constant battle. Some days you win, some days you lose. I often hate myself and struggle but I still hold down a full time job running a national centre, on good days I exercise for a minimum 30 minutes often for hours, and I take care of a household and hobby farm.

I'm trying and I still think I can beat this. My challenge is for the end of the year to post a different video. One in which I'm pain free, smiling and a lot thinner. One in which I'm happy.

FLF #6 - Chinese Medicine Ingredients

For those who have asked me what kind of herbs are used in the herbal tea, I think I have a solution of sorts. I travel sometimes for work and can't take the jungle juice with me in the plane so the Chinese doc has given me some pills to take. He advised that they have some similar ingredients to what I prepare for the tea but at a weaker concentration and he suggested whenever I haven't had the time to prepare the tea or when I am traveling to take 15 of these pills. The box these pills come in say they are 'for the temporary relief of the pain of arthritis and rheumatism'. They are like little ballbearings in size and they contain the following herbs: 

Angelica pubescens root

Spatholobus suberectus stem 

Gentiana macrophylla root 

Ledebouriella divaricata root ( spell check made that diva ricotta!) 

Asarum heterotropoides whole plant 

Eucommia ulmoides outer bark 

Paeonia lactuflora root 

Angelica dahurica root

Rehmannia glutinosa root 

Angelica polymorpha root

Cyathula officinalis root

Codonopsis pilosula root

Poria cocos fruiting body 

Glycyrrhiza uralensis root

Cinnamomum cassia stem 

I wish I could take them all the time just so I don't have to taste the jungle juice but I must admit I'm getting used to it. I used to gag, but now it's no big deal. The pills have no taste or side effects at all.

I hope this is of use to those that asked or are generally interested. 

FLF #5 - Chinese Herbal medicine & how you prepare it

I've been slowly improving and losing a bit of weight. My energy leaves have improved so much that I'm able to do exercise, it just takes the next day to recover. All in all I'm very happy with my efforts so far. I'm off the MS Contin and have no steroids. I've maintained the lyrica at 300mg twice a day and mercyndol as I need it; about 3 times a day while I'm on holidays at home.

A number of people have asked me about the herbs I use and what they are called. It is such a large mixture of herbs that it's impossible for me to say what they are. Thé Chinese medicine doc I am seeing is a very well respected professional in the field with 30 years experience. His name is Steve Clavey and as you can see by his name he is not Asian, but I have seen a few Asian students, as well as others, being taught by him in the practise. He specialises in gynocology but he assures me that he is well aware of lupus and fibromyalgia and can achieve excellent results. So far it is really helping so I'm very pleased. I've not experienced results in years. But please note this is not cheap; I think the money is well worth my health improving though. The first consultation cost $75 and the herbs $60 but they lasted about 6 weeks. The consult gets a bit cheaper for return visits. He is at 126 Russell St Melbourne. I'm sure there are plenty around that are as good as him so look around. As he is so well known in the profession I can ask about individuals if people want feedback. It may or may not be useful. 

So here is what the herbs I am currently using look like: 

The type varies from visit to visit as a result of what pain I am focusing on. The first visit the doc asked what pain there was but when I said it was everywhere he made me choose the two greatest issues I had at the time. I chose fatigue and the pain in my right knee. He told me my body was "damp" and this also needed to be addressed. I was too unwell for acupuncture which is what I went there for in the first place.  Now I'm on herbs. 

So I take the herbs and put them in the teapot below. I cover them in boiling water and soak them for 10 minutes. Then I put them on the stove, bring them to boil and the simmer slowly for 40 minutes, making sure the lid of the teapot is letting some steam out. 

I then drain the liquid through a sieve into a jug, cover the herbs with boiling water again and simmer for another 40 minutes. After seiving this lot of liquid I do the last step again. So it has been strained three times in total. This is what the herbs look like after straining. 

When you are finished the process you have a large jug of 'herbal tea' or what I refer to as 'jungle juice' left to drink.

I portion it out into the quantities advised by the doc and drink it morning and night. I'm on 100ml in morning and 130ml at night. 

I have some ready in the fridge in small containers for convenience. It tastes horrible so I always have a glass of water ready as a chaser. 

According to my partner my energy levels have increased by 60%, my knee is still a problem but is improving, enough so now that I don't automatically limb first thing in the morning and if I pace myself correctly I don't limp all day. This has happened about 5 times now (I'm still learning) 😀

I hope this answers some of your questions. Feel free to ask more and help keep me motivated to get this sorted. I go back to work next week so that will be a huge pressure to incorporate into my lifestyle. Wish me luck! 

FLF #4 - The Bed Monster

I love to sleep.  In the past, when the alarm went off I'd press snooze a heap of times cause I was always tired. Then Steve would try and wake me and I'd pretend I couldn't get out of bed. I'd thrash around like I was being held down against my will by some invisible force and tell him the "Bed Monster" had me! For ages this was a running joke at home. But now I have a new Bed Monster. I don't have to try and pretend I cant get out of bed because this Bed Monster is in my body and it makes everything so sore and stiff that I literally cant get out of bed sometime. On the good days when I can get out of bed its very slowly and painfully. I call myself Tin Man; it's like I've rusted up overnight and need a good oiling. It's the worst way to start the day but it's a pretty good indication of what body parts aren't going to cooperate that day. It's all a matter of degrees really.

I've stopped the MS - Contin and felt no difference so that was ok. I went off the Lyrica as well but discovered that it is actually helping me, I'd just been on it so long that I forgot how much pain I can be in, so I'm back on the Lyrica. I'm also taking the mercyndol and the Chinese herbs for the pain.

I've been doing strengthening exercises for my legs where if I'm lying down or sitting I raise my leg (alternatively) and hold it for the count of ten then raise it higher and hold it for ten, and if I've got it in me I raise it higher. It can hurt but I fight through the pain. And the pain is not the "I just exercised pain" its a stabbing or aching pain. Then I bring my leg back down in the same degrees that I raised it for the count of ten each time over. Some days I'm great at this and others I'm not but I'm persevering and I'm happy to report that I'm not limping as soon as I get up.

YAY!!!!  In Your Face Bed Monster!!!!!

I'm doing so well that I had a day where I didn't limp until about 4pm! This is a major achievement so I'm very happy. After the Bed Monster lets me go each morning I no longer have an automatic limp. It didn't happen overnight of course but I've finally seen some significant improvement. This might not sound like much to some people but to me this a huge leap forward. I can hear Bill Bragg singing in my head right now!

On Saturday Steve and I went to the local pool and got a 3 month membership which give up a free forth month. We had an hour of swimming and playing ball games and generally mucking around in the water. It was great fun and I was pleased to see that I could still do a non-stop lap. The buoyancy certainly made a difference to my ability to do activity and I just had to suck up my embarrassment about the way I look. I felt like the both of us had achieved something. Then we went to my brothers place for the rest of the day. I felt pretty good all day; just like I had the flu (this in my everyday state). But the next morning I was in terrible pain and I slept and slept and slept. I got up around 11am and went back to bed at about 3pm. I didn't wake up until the following morning at 8am.   Now I'm back to the usual flu like state.

There is a lesson in this and I think it is one activity a day. It's like being at work. That's all I can really achieve then I'm pushing myself through the usual shite. I'm hoping that this is the start of changing all that. Now I've typed this I think it is a pretty good start!

FLF #3: Fibromyalgia - the medical profession's F word

While the majority of Australians were watching the terrible Sydney siege unfold I was at my rheumatologists. I'd gone to work in the morning and then traveled to St Vincent's to see my doctor. Since my last visit in June I'd had major surgery, my fibromyalgia and lupus had gotten worse, I'd gained over 30kg and I commenced the pain management clinic at St Vincent's, as well as Chinese herbal medicine. I explained this all to her and questioned why I was still experiencing major pain while I was taking morphine. I didn't think it was possible. She examined me and asked a myriad of questions and then told me there were two types of fibromyalgia sufferers: The ones that responded to medication and the ones like me who do not. She then proceeded to tell me that I was an extreme case, that medication could not work on me so it was time to start weaning myself off of all the drugs. When I asked her what was I to do next, she told me that she could no longer help me, that I should stick with the pain management clinic, that it was my only hope and that she felt there was no point in me seeing her anymore. This coming from what I was told was one of the main specialists of  autoimmune diseases in the city.

I told her that I'd been researching the condition extensively and that I felt that the drugs I'd been on for so long where known to be ineffective if taken for more than three months so why wasn't I taken off them earlier? Her response was that at least now they know that I 'definitely' have fibromyalgia.

I was a bit lost when I left the clinic. It took me ages just to find a cab to get back to my car; the wind was blowing so hard my eyes were stinging for the dirt blown in them, but it was a blur in more ways than one and I finally got back to my car, albeit limping as usual. 

I drove from Melbourne to Kyneton to go to the dentist. When this doctor gave me an examination she asked me if I knew about the spots on my tongue. I asked if she meant the faint blotches? When she said yes I told her that I thought everybody had that kind of blotchiness on their tongue. It was hardly noticeable. She said not if you know what you're looking for and then asked me what kind of autoimmune disease I had. I told her lupus and fibromyalgia and she told me 'that's not a good thing for you, I'm sorry to say, you need two of your wisdom teeth taken out and with those illnesses is not going to be easy.' She then showed me pictures of people who have had their teeth taken out with these illnesses and they were swollen beyond belief. She explained it was very painful, that she just had a case of it three weeks prior and that the autoimmune disease starts attacking the gums from where the teeth were removed. She also told me it can get quite dangerous if the swelling is blocking the airway.

All I could think was - typical.

So on top of my normal everyday pain and exhaustion I now have to deal with the fact that I have no specialist doctor, I'll have no meds, I have no treatments other than Chinese medicine,  I'm not seeing the pain management clinic until 'sometime in 2015' because the clinic couldn't get the doctors to do the assessment all at once, and I can't even get my fucking teeth fixed.

It was a bad day. So was the next, but it'll be better soon.

FLF #2: implementing the plan

What a day! I could talk about the siege but I'll stick to my fightback.

I had to work from home as my horse injured itself. This was bad for Teddy but good for me as it allowed me to work at my own pace and I could break things up with rest periods. I took my meds and drank the liquid from the boiled Chinese herbs (aka Jungle Juice) as well as my other meds include lyrica, ms-contin and mercyndol. I can confirm without a doubt that the jungle juice has definitely increased my energy levels. I also think that I'm releasing fluid better now. I still have fluid today on waking up. I've only been on the jungle juice for 6 weeks so I'm giving it time too work. The results I have achieved are really great for such a short period of time.

I did office work and got up and did chores throughout the day. I've had to shovel horse manure and got about a wheelbarrow full when the pain in my lower back became quite bad. I fought through it, finished that load, took the contents to the tree area and unloaded what is now new fertilizer. My right arm fared pretty well but I could feel the back pain traveling to the other parts of my body. North and South. I worked at the computer to relax it.  I did some mopping and cleaned the kitchen. I finished but the pain traveled up my back on the right side just below the shoulder blade and down my right side leg so I'm limping again.

After working at the computer more I took the animals with me to get another wheelbarrow of manure. I had to stop three times to do that due to the pain. Finished then took the dogs and duck to the dam to play and swim. I noticed that the pain hasn't left me since and I'm exhausted. I'm cooked up more herbs for the jungle juice and even lifting the pottery kettle hurt my wrists and right elbow. I was that tired by 3.30pm I had to sleep. This happens a lot and I have to sleep in my car when coming home from work. It's gotten better lately though.

I'm meant to document very short term goals like how long I sit, stand, lift and walk in a day and increase it by one minute each day. Doing jobs that just need to be done can only be looked at if I combine all these things. I'll guesstimate that I can do 15 minutes and then need to rest. For maybe 15 minutes but as the day goes on this increases. I'll say 15 minutes and average it out over the next three days.

I started to watch a medical lecture on fibromyalgia online but didn't have time to finish it. Now every muscle in my body hurts, even the tops of my feet, so it sweet dreams from me to you whoever you are. Introduce yourself.

And so it begins...

I'm about to enter a very scary place. A place where I have to turn my life around and find some normalcy in a situation where I'm in constant pain. This isn't new to me. I've been dealing with this for around 15 years and the symptoms have slowly accumulated to where I've been in constant pain for a few years. The last six months it's a daily struggle just to function. But I have hope that I can turn this around. Maybe not to perfect health but at least to a manageable happy life.

I'm writing a blog for two reasons: one, because the Manage Your Pain book that I was told to buy at St Vincent's Hospital as part of pain management therapy suggests that I kept a record of how I'm progressing and feeling; two, because if I'm going to do it I may as well try and help somebody else experiencing the same or a similar situation as I am. If I can.

The last three months has been a situation of trial and error. I'm learning my limits and my capabilities, I got a grasp of what chronic pain really is and how I need to see it and to manage it, I've exhausted most treatments to help my condition and none of them have worked all that well but they have certainly taken the edge off, I learned the importance of pacing myself, ways of breaking the cycle, and how to set relevant, realistic and achievable goals to improve my health and fitness.

My long-term goal is to be able to ride my horse again. My short term goals include being able to travel to work, do my work, come home and still have some energy left to do some physical activity around the farm or getting some exercise. I need to learn to use my mind to overcome all the pain while doing this. I won't list all my health issues as there are too many. They will all probably come out eventually via the blog. Another short term goal is a need to focus on my right side as that causes me the most pain lately. Currently my whole right side is affected, but the pain in my right arm makes it difficult to even hold something as light as an iPad. I'll need to do exercises to help strengthen this even though it's unlikely the pain will get better. I'll need to focus my mind away from pain altogether and that will be the hardest part to learn I think. 

I'm also using Chinese medicine as well as conventional medicine. I hope this will improve the other doctors diagnosis of little pain improvement without drugs. I hope they are wrong. Another short term goal is to get off the painkillers. That's about it for now. I'll break the short term goals down, tackle one by one and kick their arses.

I'm a pretty positive person and I guess this blog will reflect that but also expect some whingeing as well. I'm meant to be honest with my feeling so I might as well do this properly and put it all out there.

So if this is an area you are interested in either as a sufferer or a researcher feel free to come along with me. It wont be posting daily, just when things are significant or I need to record details and feelings.

if you've got any pain management tips I wanna hear them! Please share with me and maybe take your journey with me. Any motivation from someone who understands this situation is most welcome! I think I've got the fitness side of things covered. I'm well educated in those areas but will seek help if needed as time comes. I'm guessing a physio will be my first port of call.

 Oh, and I also have a shitload of weight to lose  but it's all part of it.

I'll record the highs and lows here. I don't know how long it'll take but I have to have some sort of success in the end. So come with me and share your story with me, motivate me and I'll be there for you too!

Tania