Tuesday, March 30, 2010
Firstly, happy Easter everyone! I hope that you all get to spend time with your families or get to do something FUN for a day or two. I don’t plan on doing anything special, but I don’t really celebrate Easter or Christmas. I might just go through old photos or something, that’s always a nice thing for me to do :)
Secondly, Yah!!!!! My application for disability support from the government was approved today!!! They have agreed to pay me $255 per week which I certainly wont be grumbling about. I think the maximum they will pay is about $320 per week but it depends on your assets and cash on hand etc. It really is GREAT news for me and a real victory for anyone who has one of these illusive illnesses. In recent weeks I had felt the worry and stress starting to rise over my financial downfall so I can now ‘relax’ for a while. Aaaaahhhhh :) hehehe
Regarding my previous post, thanks to everyone who commented, it’s great to hear stories of people who have recovered. Some people were asking why and how these people had recovered. If anyone knows what treatments worked then PLEASE leave a comment with any info you have … any positive info is always welcome.
I can’t wait to tell my friends and family that I am officially disabled haha (they have been calling me a retard for years LOL).
Saturday, March 27, 2010
I had my first meeting with a psychologist the other day. She has been appointed as part of my ‘care team’. I didn’t really get all that much out of it and I’m not sure that I will given the fact that psychologically I am doing pretty good. The interesting thing though was that she herself had suffered from CFS for 6 years and had recovered. I am mentioning this because it struck me that I had never spoken to anyone who had ever recovered. There is all this talk that some people do get better, but where are they??
All the people who blog etc are still unwell and some have been unwell for many many years. Being in touch with the chronically unwell made me forget that people do in fact get better. I guess the thing is that people who do recover no longer have a reason to blog and so they disappear from our view. The concept of recovery almost seemed like a myth to me but my new psychologist was living proof. Oddly enough, I instantly had my guard up and assumed either she had never had CFS severely or else she had been misdiagnosed. I quizzed her and it seems she was very ill, bed ridden for years, unable to even read. So there you go, we shouldn’t lose sight of the fact that we can recover … it really does happen for some people!!!!
Does anyone else know of people who have recovered? It would be cool to share some of that hope :)
P.S. Thats was Sisyphus, not Syphilis .... hahahaha
Monday, March 22, 2010
Thank you, Shelli at living-the-cfs-life, for nominating me for this prestigious and mood lifting award!
1.)When you have received this award you must thank the person that awarded you this in the new post.
2.) Name 10 things that make you happy
3.) Pass this award onto other bloggers and inform the winners
So, without further ado, here are ten things, in no particular order, that make me happy.
1. Sitting down and just having a normal chat with my Mum or Dad about nothing important.
I seem to spend so much time with Mum and Dad that is about damage control for me or someone else, so to just be with them for pleasure rather than pain is awesome. I look forward to more times like these.
2. Getting a good nights sleep.
If I wake up in the morning and real refreshed and like I have slept well then I know it’s going to be a better day
3. Having a plan.
Being directionless stresses me out, so knowing that I have a plan makes me feel in control and the stress melts away.
4. Talking to old friends about old times.
I’m not into living in the past however many years ago my life was far closer to perfect than it is now and it’s nice to remember how that used to feel.
5. Feeling the sun on my skin.
I love that feeling of early morning sun warming your skin.
6. A good laugh by yourself.
I love it when something totally unexpected happens and you have a genuine laugh to yourself about it. It pulls you up and reminds you that you only ever really live in THIS moment and you can forget what happened yesterday and the worry of tomorrow.
7. A naughty treat.
Fries from McDonalds or chocolate!!!! Mmmmmmmmm, enough said, right?!
8. Completing a task.
Regardless of what the task is, the satisfaction you get when you successfully complete it always motivates you to set a new task!
9. Recognizing that I’m not alone.
CFS has been really isolating so far for me and having people around both in the real world and the internet world is a huge comfort. When Doctors and some friends etc really don’t understand it’s totally fab when you get real validation from people that do ‘get it’
Setting myself little or sometimes big arts projects has always been the way I externalize my personality. I am now learning that creativity is so much more important than that. Each day I find creative ways to live within my current confines. I think it’s a gift to be a lateral thinker!
I'd like to nominate Terri at cfswarrior for being an inspiration!
Thursday, March 18, 2010
I’m trying really hard to stay positive and be realistic. I have made an effort to educate myself best I can and be proactive in daily living and also for a longer term plan. I know that this is not just going to go away and it is more than likely that it will remain in varying degrees for a looooong time!!! I can feel my frustration now rising with people around me. Everyone means well but it feels like they either are not listening or aren’t taking this seriously, or they are just plain not interested. People that should know better by now will drop in unannounced and talk and talk and talk …. Do I really have to remind people constantly that just because I look ok please don’t assume I am. The other thing that pisses me off is remarks like ‘in a few months when you are well again’ or ‘you’ll be fine before you know it’. I know that those comments come from a good place but THEY ARE NOT HELPFUL, it makes me feel like YOU ARE NOT LISTENING …aaaaahhhhhhhh!!!!!! Either listen to me or mind your own business please!
When will they ‘get it’???
To me it seems like the sensible thing to do is to start making plans and finding ways to live successfully with this rather than trying to deny its existence or to just sit and wait for a few months and see what happens. I know from past shitty experiences that I am an adaptable person and I can always find ways to feel productive. I have endured many challenges and I have always made the most of things rather than just giving in to them and allowing them to take life away from me. I have tried to express this to people around me and they all seem to think that I am being negative, I shouldn’t assume that it’s not going to get better soon and it’s to early to be changing things to accommodate this. I totally disagree, I see my willingness to embrace it as a positive move rather than a negative one ….
What do you think???
Monday, March 15, 2010
Hmmm … How do you decide what treatment path to go down?? By all accounts there is a better recovery rate if you start treatment early, but what treatment. I’d like to be one of those people who is really content to just go along with whatever their Dr suggested. I am convinced that My Dr knows his stuff and that he is an expert in CFS in my area but …. I’m more inquisitive than to just go with the flow.
I have spoken to quite a few other CFS’s now and they have all had varying degrees of success with different things. Florine F, Valtrex – Valacyclovir, D-Robose, LDN, Amino acids, Vitamin B, Vitamin C, Adderall, Ritalin, NLP CBT Gupta, eating no red meat or sugar etc, graded exercise, OMG!!!!!! How do you know???
People have had success with all of these things but some people do nothing and still have recovery. All I know for sure is that I want some kind of functionality to return.
After having a really low few days I was lucky enough to have been re-motivated by people around me including some of the visitors to this blog (thanks for the artist links Cusp) ….. I am going to spend a few days thinking and I am going to plan a project that I can work on in little bits (as suggested by Jo) and I am going to pick my sorry arse up!!! And DO SOMETHING!!! Hahaha
If anyone has anything to say about treatments I’d love to hear it …..
Friday, March 12, 2010
I’m bored with being bored. There are only so many different ways you can look at the same 4 walls and I have already found all of them! I’m not a huge TV fan and it’s the weekend which means TV is even worse than usual, so that’s not an option. I’d really like to be outside. It’s windy but it looks beautifully sunny. I have two balconies which is a blessing however, same story … there are only so many things you can see from that single viewpoint. My apartment is up 3 flights of stairs, and while I have managed to work out a way I can manage to get down them getting back up is not always so easy, so it’s really safer to just stay inside
Before I got sick I used to amuse myself with work. My day job was doing graphic design but apart from that I also worked on photographic projects and also music projects. I still have the passion for these but logistically it’s difficult now. The photographic work requires physical movement which is just not gonna happen and the music stuff I can manage in small increments. Working in small increments is really frustration and requires more patience.
If you are interested in hearing some of the music that I have been working on while being housebound you can go here http://www.reverbnation.com/leeleetheprettytanicos Oh and I should ad that this is stuff that I am working on with producer Peter Tanico who is in NYC.
I think a big issue with boredom is that even if you have stuff to do you really want to be doing something else. There are things I could be doing like sorting out paperwork and looking at my finances, I do need to find ways to minimize spending, but that is really an unappealing task so it’s not gonna help with boredom. I could start working on cooking some meals for the week. I try to cook in batches so I don’t have to waste energy everyday dealing with that. Cooking is boring too though when it is out of necessity rather than for pleasure. Aaaaahhh yes, that is the key ‘pleasure’. Gotta find something new to do that is fun
Any suggestions? I’d love to hear what everyone else does to amuse themselves???
My only restrictions are that I live alone, I live up 3 flights of stairs, I cannot walk more than say 20 meters without it causing problems later, I can’t focus on anything mentally for more than about 20 minutes before the brain fog sets in …. Hahahaha … so … any suggestions????
Thursday, March 11, 2010
I’m really really really ANGRY!!!!!!!!!!!!
No matter how shitty life has been or how bad I feel I always remind myself that at least I am able to care for the people that matter to me. Well even that has just slipped away. Someone really important to me had something dreadful happen today and there was nothing I could do. In the past I would have hopped in my car and driven over to ‘be there’ but all I could do was sit on the end of the phone and say how sorry I was …. which was totally useless. I’m so angy, this stupid fucking illness has not only ruined my life but it’s now ruining my ability to be of use to others. I’m so worried about my friend and I don’t even have the strength to pace up and down. How do you convince yourself that there is any hope when you are forced to miss THE most important moments in life.
Another friend of mine has CFS and he missed my partners funeral and his daughters wedding because if it. I now know how he must have felt …. How can you expect someone to forgive you for being absent when it really counts when your excuse is an invisible illness ….. IT”S ALL JUST SHIT ……..
Tuesday, March 9, 2010
January 27th I initiated the process of applying for disability support pension with Centrelink (social services). They sent me out a huge pile of forms including one for my Dr to fill out. I went through the process of gathering all the info and documents required and filled in the forms and returned them. I noticed at the time that they did not ask for a separation certificate from my ex employer and they did not ask for a copy of the loan agreement for my mortgage. I did supply a mortgage statement which indicated how much I owe on the loan and what the interest rate is and fortnightly payments etc.
A few days later Centrelink called and ask me to come in for an interview and also to be assessed by their Dr to make sure I wasn’t faking etc. I went in and met with the Dr, he just basically asked the same question over and over – ‘when will you be able to go back to work’. My answer was, I have no idea, but it wont be anytime soon. The interview was just to go over the forms I had submitted to make sure nothing had been left out. Everything seemed to be in order and I was told that I’d be notified sometime in the next 6 weeks as to if my application had been successful.
Yesterday I received a letter from them and I thought ‘oh goody, lets see if I was successful’. Unfortunately the letter was just to notify me that I had failed to supply a separation certificate and mortgage loan agreement. The letter also stated that I had 14 days from the date stamped on the top of the letter to return the required paperwork or else my application would be cancelled. The date stamped on the top of the letter was the 4th of March and I received the letter on the 8th of March, so I was already down to 10 days. I called my ex boss and asked for the separation certificate, no problem there, which was great. I then called my mortgage lender to get a copy of the loan agreement and they told me it’s a charge of $50 and will take 4 weeks!!!! Aaaaaaaaaaaahhhhhhhhh!!!! I explained to them that I need it in 10 days and they said blah blah blah blah, we will try but it might take 4 weeks!
So now I am a little more stressed than I was a few days ago …… but I will just have to sit and wait and see what happens.
I haven’t worked since November 2009. It’s not until you have no income that you realize just how much it costs to live and having to buy gluten free groceries increases the shopping bill substantially. With recent medical expenses and time in hospital etc I have gone through a shit load of $$$ since last November. I really do hope that I manage to get some positive results with Centrelink, otherwise I am going to be totally fucked!!
Sunday, March 7, 2010
Yesterday something truly fantastic happened!!! I went out !!! I wasn’t going to hospital or to see a Dr, but I WENT OUT !!!
The night before I started taking Endep which is an old school type of anti depressant. I am not suffering from depression but my Dr reckons that taken in very low dosage it helps us CFS people with sleep. So I gave it a go and WOW, I slept deeply all night. It was heaven So yesterday when I got out of bed I felt better than I had in months. I phoned my good friend Michael and he came and got me and took me to the park. OK, so it wasn’t out to the movies or for dinner or a night club or theme park ….. but I was out of my house doing something nice for the first time since November 2009. I even had a short walk, maybe 100 meters. I sat on a bench and lapped up the fresh air and watch people … mmmmm it was really nice.
On the way home we did the drive through at McDonalds and I GOT FRIES …. Yippeeee. Hahaha. Sounds like small stuff to be exited about but honestly I have been craving fries for ages and it’s not something I can organize easily.
So a walk in the park and fries. Yesterday was a fab day
I have to say that I was expecting some payback today though. You always expect to have that icky malaise the day after to ‘do something’. But so far so good …. I don’t feel as god as yesterday but I’m doing ok.
I think I had a little glimpse of what it’s like to feel normal again and it’s given me new hope ……
Thursday, March 4, 2010
I went back to see my Dr yesterday and I am pleased to say we are starting to make progress in terms of a plan. We haven’t been able to do much up until this point because during all the testing I had to actually get a proper diagnosis we discovered that I had a nasty malabsorption issue. My pancreas does not make the enzymes that it should and this has lead to various gut problems. Obviously there were symptoms but I had just been dismissing them because I have Coeliacs and I had just assumed it was that causing the problem. So … I am on a MEGA dose of anti biotics for a month (which I actually started 2 weeks ago) and these have made my CFS symptoms worse, uuurrrrrhhhgggg …
Once I finish the anti biotics I can start taking Creon which is just an enzyme supplement and that should help with the malabsorption thing.
In terms of CFS I have started on vitamin B injections and that’s it so far. The plan is to wait till my guy is sorted and then start trying treatments and see what I do and don’t have success with. I will most likely be trying things like Amino acids which aren’t overly invasive. I also now have a ‘Care Team’ which incorporates my Dr, an exercise physiologist and psychologist (who both specialize in CFS) and I also have a social worker to sort out any general care issues at home etc. So all I really need now is for Centrelink (social services) to come to the party and give me some sort of pension and I will be able to relax and hopefully make some kind of recovery …..
I am expecting to see the exercise physiologist in 2 weeks and start some kind of graded exercise. I have to admit I’m dead scared to try this because up to this date any movement that raises my heart rate even slightly lands me in bed for a few days …. If anyone has any personal experience, good or bad with graded exercise I’d love to hear it
On a positive note, I actually managed to bake some damper yesterday!!!! Unfortunately the effort involved wiped me out so much that I was unable to eat any, hahaha but maybe I can try it today!!
Tuesday, March 2, 2010
For people who don’t have CFS or don’t know much bout it … this info is for you!!
Chronic fatigue Syndrome is such a misleading name for this illness, which I guess is why it is also known as ME (myalgic encephalomyelitis) and more recently CFIDS (chronic fatigue and immune dysfunction syndrome).
When you use the term ‘fatigue’ many people often get the wrong idea. I remember telling a work colleague that I had CFS and her response was ‘Oh I had that once and I was tired for a whole month’.
WRONG!!! Chronic fatigue and feeling tired are 2 different things altogether. Tired is when you have had a busy day and you’d like to have a nana nap in the afternoon. Chronic fatigue is when you cannot make it all the way through having a shower without having to sit down and rest and then afterwards feeling like you have set a new record for running a marathon!
Fatigue is of course only one symptom associated with this illness. There is huge list of symptoms, most people have several but not all on the list. The ones I have daily are fatigue, extreme muscle weakness, dizziness, lack of balance, random muscle and joint pain, brain fog, lack of concentration, memory loss, problems with speech, low grade fever. You can see why the term chronic fatigue can be frustrating and invalidating to someone who suffers all these symptoms.
To try and sum up how this makes you feel is kinda difficult but I read something yesterday which I thought was pretty apt. A Dr who deals with this stuff every day said that people who have severe CFS feel the same way that someone with AIDS does about 2 months before they die. I have personally spent time with people dying with AIDS and I believe this statement is probably quite accurate. Sad but true!
Of course people suffer with CFS in varying degrees. Some can keep working, some cannot, some cannot leave their homes, some cannot even leave their beds!
I am currently in the ‘cannot leave home’ category. I go out only for Dr’s appointments etc and that is with the help of family of friends.
I know this all sounds totally hopeless and just dreadful but I count myself lucky. There are people far worse than me and I at least am not suffering depression like so many others! I read the other day that up to 20% of CFS sufferers commit suicide. I am fortunate not to feel so hopeless ……
Who knows what’s around the corner, right?!