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.

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Yikes I haven’t posted for awhile …

I haven’t posted for awhile, it has been a busy few days. Friday I was out all day, in the city doing media for Armageddon Expo and then Saturday I attended Armageddon Expo. Those two days have set off a big flare up and my fatigue has been horrendous, today wasn’t as bad but still I am not doing well.

I had a busy day today, accompanied Mum to the dentist, then we went to Doncaster and had lunch. Got some party supplies for my birthday BBQ on Saturday and then we went to Greensborough Plaza for a few things.

Finally resting, and tomorrow I have counseling and then Physio in the afternoon.

If I wasn’t with a bad headache I would be writing more.

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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.

Insert Witty Title Here

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I can’t even think of a title for this blog entry, how lame is that? Well I didn’t actually write an entry yesterday because it was a pretty bad day. I couldn’t really type, I was in so much pain, just being on my phone was difficult. I didn’t sleep much and I was in so much pain all over, I barely made it through a short trip to Woolies. The headache was hitting early, so I made it to my local massage place. I had a neck, shoulders and arms massage, painful as anything but it did loosen up my muscles and hopefully blood is flowing better now. After that I came home and had lunch, barely made it through a walk with my dog and I ended up in bed for several hours. After that I just relaxed on the couch and I finished reading Horns. I ended up watching the film as well and had a restless night. That was my Sunday.

I am not having as much trouble walking today, but the pain is so bad. My hands aren’t too bad so I am obviously able to type. It will be *gulp* period time soon so I will be basically useless. Not sure what today holds, but this week I will be getting forms for DSP and the Disabled Parking, as well as looking into the counseling again and seeing my GP at the end of the week when my saliva test results are back in. I want to get the ball rolling as quick as possible, Mum goes away again for a couple of weeks soon. Not really looking forward to being on my own again, in fact it scares me. I struggled last time and my symptoms have been all over the place lately. so I guess I will see.

I plan to go to Armageddon Expo this weekend, I am excited but also not due to how I have been feeling this week. I don’t know how long I will last, if I will manage things, it does scare me but I can’t think about it now because I wont know how my symptoms are being until the end of the week. I like to think ahead and make plans if I can, I like to have a schedule, so I can pace myself.

And next weekend I am having my 30th birthday BBQ, I haven’t had many RSVP’s, which automatically makes me think no one likes me. Which I am sure isn’t the actual case, but that is where my mind automatically goes. Whatever the case, whether a few friends show up or more, I want to have the best time I can have. I know I have missed friends birthdays due to my health and I feel so bad about it, to the point I have cried over it. I can’t help but feel people not coming is their way of making it up to me for not going to theirs. I really don’t know, I haven’t felt happy about this upcoming BBQ, because I keep picturing myself sitting there all alone. I know that what be the case, I just need a pick me up in terms of people actually showing interest.

Don’t know what the rest of Monday has in store for me, I may continue on with another book, I have lots to read and again it is the one thing I can seem to manage even if my concentration is all over the place and I need to reread pages because things went over my head.

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?