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Well it has been awhile ….

I started this blog to help me cope with my life, since my last blog entry things have changed in my life. Someone has come into my life who has had a big positive change. I am no longer on my own, I have found my life partner. He is my everything, and he understands my health issues and he looks after me. It may seem like things have gotten so much better and all the problems are solved. But sadly no, they aren’t.

Having someone in my life who is always there for me is absolutely amazing. I wouldn’t change a thing. But that doesn’t mean my every day chronic pain and chronic fatigue just disappear. If anything things have slowly gotten worse, there are days I struggle to walk to I got myself a walking stick. There are days I can barely keep my eyes open and struggle to be able to do anything. I feel worthless and useless, yet I do have something worth fighting for, and that is my partner.

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Things like this don’t just disappear, my depression is still very much here and it can be quite crippling. I cry often, I have to force myself to do something, anything so I don’t feel like absolute shit. It is a struggle every second of every day, and as much as I try to make others understand, no body really does unless they suffer the same thing. My partner is as understanding as they come, he listens and takes everything in. He too has pain he suffers, so he can relate to things, and he has struggled with depression as well.

I don’t know if I’ll ever have any kind of normal life, the struggle to just have a normal day is such a big one. Lately I have been trying to get in some walking, it might go well for a few days but then the crippling pain sets in and I can’t do much for days on end. Lately I have felt like no body likes me, I don’t quite understand interactions, I over think every little thing, and I can’t shake the paranoia of it all. I did solid counseling for months and while I felt I came out of it a bit better, I still struggle badly with everything. I can try and tell myself to stop over thinking but it still happens.

I really need to keep up this blogging journal, and vent out how I feel. It doesn’t matter too much to me if no one reads it, as long as I get it all out.

Not another panic attack

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Yes, while I don’t want to openly admit it, I will. I had a panic attack in the wee hours of last night, early this morning.

Pretty much everything is getting to me, the weekend being a big event with Armageddon, the stress, just everything really got to me. The journey to get to the event if I use public transport is between 1 to 2 hours, which is a lot and public transport in big doses sets off symptoms and headaches. I don’t want to go to an event feeling like crap upon arrival, I actually want to have a good time.

Being told that I may have to do that is a nightmare, I didn’t think driving as a favour was too much to ask. It is worrying me that being able to go to a Con is now such a difficult task. My last Con I almost collapsed and I had trouble walking, thankfully I had some good friends who gave me a place to rest for that second afternoon.

I really want to take my niece to this con, she loves all this stuff and I know she will have a blast. Her parents don’t want to take her, and fair enough it isn’t their thing and they are happy if I want to. I do want to, I want to show her everything and introduce her to friends. She is a mini geek, and this is something I know she will enjoy. Will it be added stress? Maybe, but the stress of public transport and having to stay at the event longer than I want to is much more stress.

Up until last night I had a decent day too, I had my first counseling session, which went really well. I feel like I have finally found someone who understands me and took in everything I had to say. Unlike the last counselor I saw, he doesn’t have that ‘quick fix’ attitude like she did. I really felt a weight lift off me by getting everything out, doing it face to face with someone who was actually listening.

Not sure how things will work out this weekend, depends I guess. I feel like in this case I need to be selfish and think about my health. I always put everyone else first and yesterdays counseling session made me realise I need to put myself first once in a while and not feel guilty about it.

Take me seriously

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Yes take me seriously.

You know I didn’t have it in me yesterday to write an entry yesterday, I was in a lot of horrible pain, PMS is kicking in and my mood hasn’t been great. There were tensions with Mum as well, which didn’t really help matters either. I am sure it is frustrating for her to see me like this, and in turn it is frustrating for me to feel like this. In a perfect world I would be fine and tensions wouldn’t exist.

I couldn’t help but feel my chronic illnesses weren’t being taken seriously yesterday. Nothing seems to hurt my feelings more than it being brushed aside and not being taken seriously. I spoke to one of my closest friends on the phone last night and I couldn’t help but feel he wasn’t taking how I felt seriously and it was really hurtful. In turn I didn’t speak up because I didn’t want to hurt him.

Coming up this week, he is going to be in town and staying with me, planned is Armageddon Expo on Saturday. Already I feel stressed and full of anxiety over how my body will handle the event. I can’t manage more than 30 minutes straight on my feet and this will likely be all day. The day before I will likely need to be in the city all day for guest interviews. Looking forward to doing that but not being in the city all day and taking public transport. Then that night there is a special screening at the Astor cinema of Superman The Movie with Margot Kidder doing a Q&A and signing autographs. Honestly if two of my female heroines were not at this event I probably would skip it, and I have been attending since 2008. That is how bad my health is right now, things have become that difficult.

Later today I have a counseling session locally, they put my down as an urgent case when I rang Monday. Then later that day I got a call saying I can come in today. I wasn’t expecting it so soon, I have mixed feelings about it. I want to talk to someone but I feel so anxious about it. When I did counseling last year the lady was lovely and understand but again I didn’t feel like I was being taken seriously and she was expecting me to get over everything after a week. I hope my counselor today wont be like that, I want to be heard, taken seriously, and I want someone in my corner.

Will see how things go I guess, I have been in so much pain, feeling so down and depressed (more so than usual) and the fatigue is horrendous. I am not sure this d-ribose is doing much, I have been taken the recommended dose and yesterday right after I drank it I felt a wave of huge dizziness and nausea, so bad I needed to lay down.

I also felt such sadness yesterday finding out two very close people to me had broken up, I love these two people so much and it makes me sad to see they have ended their long relationship. I do worry for them now, I don’t want to see anything bad happen and I hope so much they can get through this.

And finally, I have decided to take a break from the main Fibromyalgia support group on Facebook. As much as I love that place and feel less alone in the world, it just felt way too negative. I can’t handle the negative energy right now, and it seems to be steaming there right now. People are suffering and it is easy to make suggestions and offer opinions, but people seem to think they have the right answers, and no you don’t. I have noticed some people there actually dismiss Fibro altogether. I don’t know if things will change there but I really needed to take a step back. I will share this post there, and I hope I don’t offend anyone, but really, I think there needs to be more positive energy there when someone has a problem.

Another sleepless night

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This is where I wish I was right now …

Oh boy, yet another sleepless night. I have no idea how long it took me to eventually fall asleep, even though I felt so tired. I kept waking up once I did fall asleep and I woke up in a cold sweat. I ended up trying to get more sleep this morning but it didn’t amount to much. I was in and still am in a lot of pain.

Yesterday I felt the fatigue really badly, I went to the park but I didn’t last too long before needing to go home. I went back out later and I got a wrist/hand support, they only had one in my size, so I need to alternate which hand it goes on. I feel a touch better with it on, but I really do need to have one on both hands. The pain in my hands and wrist has gotten so bad, it is really upsetting to not be able to hold things, struggle just using my phone and I am fighting the pain and movement to actually type.

I managed to get more reading done with Horns, what a book. Once I finish it I hope I can watch the film version, definitely curious to see how they adapted it. I wrote a review for Gone Girl, only took me a little over a week and my hands are aching from it.

I haven’t felt any changes either from taking the d-ribose powder, which I have upped to 5mg 3 times a day as instructed for Fibro and CFS. I am still getting my low impact exercise every day and if I try to do a bit more, it’s a nightmare. I wanted to start a program at the gym, low impact on one machine for 15 minutes twice a week, and I may have to start with one day a week.

Just getting worse week by week is horrible, I am at my wits end, it is hard to see a life where my symptoms aren’t ruling my life. I wonder if I was ever meant to see any good days with minimal pain ever again. I guess it has to be taken a day at a time, and I can’t tell what will happen but my faith seems to be slipping away.

I am doing all the right things, yet just getting worse. I guess I can see the positive, I am alive and I have family and friends who love me. But no one really seems to understand how I feel and how having these chronic illnesses is absolutely horrible and a disability. Again I hope this blog opens up at least someones eyes as to what it is like.

For now, I am going to try and rest up and aim to hopefully go see a film tomorrow and maybe just maybe it wont result in a migraine.

Rest – where are you?

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So yesterday was not a bad day, it wasn’t really a good one either. The pain was really bad, and since the afternoon my left knee has been in so much pain, I can’t put any weight on it. My hands haven’t been any better, I couldn’t even open my juice this morning. It is weeks like this I am at my wits end, everything is so frustrating. The fatigue is awful and I push myself, probably far too much. The pain is so awful and I feel utterly useless. I do everything that I am supposed to, yet I see no improvements and things get worse.

I do need proper rest but my own mind can’t just relax, I feel like I need to be doing things. Meditation is actually such a difficult task because I can’t seem to shut down. I really just have no idea anymore, I guess I need to go with the flow?

I will be looking into counseling next week, I will get Mum to go with me and organise it. I need to drop off my saliva for a midnight saliva test I did to check my cortisol. I got the papers to do the test in May and I only picked up the kit yesterday, this is how bad my memory is. Will go back to the Doctors next week and see the results and discuss perhaps seeing about specialist. I am tempted to apply for a Disability Parking Permit, and for the DSP again, this country and this ridiculous government are making it so difficult for people who actually need help and support to get it. Not everyone is a liar and using the system, I actually need the help and I have no idea if I will get it.

I forgot to check the chemists yesterday for something for my hands, will have to try today. I did treat myself yesterday to some Lego minifigs to try lift my mood and I got Maleficent on blu-ray, which I really enjoyed watching. I read more of Horns, an interesting book. Looks like I will be going to the park for a bit with the family, and my aim for the afternoon is REST! Seriously I need rest, why wont I cooperate with myself?

Pain filled day yesterday but the sun is out today

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After yesterdays non sleep and total fatigue, the rest of the day was not really that pleasant. The pain was horrible through the day, my hands and legs were especially bad and I was on the verge of getting a migraine all afternoon. Thankfully there were positives to help me through the day, had the neighbours pop in for a little bit, which is always nice.

Made a trip to the local plaza, despite the fact I am basically broke, I finally went into Bras & Things and got remeasured for a bra, my last measurement 2 years ago I was a 16/18 DD, this time around an 18/F – these things seriously do not shrink no matter if I lose weight. So yes, bigger mammaries have no doubt been hurting my back, but a proper fitting bra actually helped. I did spent the money for it, and I noticed right away my posture was already correcting itself and I felt a lot lighter. Good decision.

I also invested in some new books, I purchased Joe Hill’s Horns on Tuesday and I picked up Wild by Cheryl Strayed (my sister has Produced the film version, can’t wait to see it), Midnight Movie by Tobe Hooper (yes the horror director) and a nice edition of Dracula by Bram Stoker, since I don’t actually own my own copy. I have a lot of books to read so hopefully these will keep me occupied while I try and relax as much as possible. Reading is one of the only things left I can do without much discomfort. Considering I am an official film critic and these conditions make it so difficult to watch a film and concentrate and then go and write a review. Doing the reviews in audio forms is much easier and I do find myself forgetting to do them. A step at a time I guess. I may just need to step away from the reviewing for a few weeks and go back in fresh. It is always hard to make that decision and to do something right for myself, as I always feel I am letting someone down.

Last night I had trouble just sitting and being able to watch a few shows with my Mum, I kept turning to my phone to be doing something. I can’t stand that I keep doing it, and it has become a natural action. I am going to actively try to use my phone less, don’t hop on Facebook as much and mainly play a few games. I actually really love playing Kim Kardashian: Hollywood, it is a great escapism game, I am not focusing on myself so my brain actually relaxes itself. And you know I get to be an A list celebrity haha. Hobbies are actually a good thing to have when dealing with chronic illnesses and depression, but when these conditions take away the ability to do them it really is frustrating. I love to sit and colour, but its becoming difficult to use hold a texter. I am in pain doing it and I am losing my grip. I love doing puzzles, yet I end up getting headaches, same with building Lego. My other hobby of doll collecting requires money so I have slowed down my spending there. However I do enjoy changing their clothes and posing them, and there are days I can’t even manage that.

Not sure what I will do today, the sun is out finally after a week of doom and gloom, in typical Melbourne fashion. So I hope I can get some time outside and maybe I will look into getting something for my hands, to hopefully ease the pain or allow me to actually grip things. We shall see … and a trip to the cinema seems unlikely, not feeling it today unfortunately.

Pain = Can’t Sleep = Fatigue = zzzzzzz

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Talk about having a bad night, I was wide awake till the wee hours of this morning thanks to agonising pain in my legs, thanks Fibro! I have no idea when I eventually fell asleep, it was however well after the tears from the pain and after taking an ibuprofen in vain. I wound up waking up early, feeling like I had been hit by a brick wall. I had to get up, my dog Roddy needed to go out and pee (I needed to pee, damn full bladder) and he needed to be fed. Now for the last week or so, if I wake up I have been making myself stay up, even if I wake up at 6am. But not this morning, after feeding Roddy I found myself back in bed, my eyes were burning and even then I had trouble getting back to sleep. I eventually woke at around 11:30am, something I hate doing. But I needed the sleep and naturally I am still bloody tired and I have no energy.

I am hoping (again probably in vain) that a drink of d-ribose powder may help but so far I haven’t felt any different taking the stuff. I know we are all different, so I am still holding out hope. I really don’t like thinking negatively about things, but when seemingly nothing works, my mind just automatically goes that way. As much as I try to get my mind away from the negative thinking, it feels like it is on auto pilot. Last year when I was in counselling (I had to stop because I couldn’t afford $130 a week, and my subsidised sessions were used up), I was taught this method of retraining my brain (thanks to Fibro fog I can’t bloody remember what it is called), and I often use that to help but more often than not it fails.

I am hoping to get back into counselling, even if I have to fake being positive so my brain will behave I want to do it. Fear of the unknown doesn’t help, I don’t know whether it will help or not, but considering how tough this year has been and having spent two months without my mother who I live with because she was away, was such a challenge. I came to realise I can’t actually do things people take for granted, some days I couldn’t cook a meal for myself, or manage to shower, or even to get up and dress myself (I spent a lot of time in my PJs or trackies). I am making an effort to get dressed each day and not be in trackies, no matter what is going on. Today though I am in my trackies, and I will attempt to dress myself.

My own future is very uncertain, I may never be able to work or have any kind of normal life, but if I can make it out of bed and do a few normal things, I know my own mental health will be thankful for that. So what does today hold? Well I will attempt to get myself dressed, I am shocked I can type because my hands are in so much pain and I am having trouble just gripping anything, and whether I go out or not, remains to be seen. If anything I want to get some reading done and aim for a cinema trip tomorrow.

Well I am just blabbing here but it helps to get it all out and not keep things bottled up. Maybe this will give some insight into what it is like for me and others who suffer these same issues.

-Marcey