Category Archives: Auto Immune

Long time between posts

It has once again been a long time between posts on this blog. I guess with facebook I don't feel as much need to update people on my blog. If you know me and would like to keep up with me on facebook, you can add me as a friend. My facebook profile is http://facebook.com/clikchic.

With the weather warming up and being very up and down with lots of humid days I am finding my health is a lot of up and down. I don't do well on humid days and get a lot of pain prior to rain. Heat in general knocks around my energy levels as well. Air conditioning does provide some relief, but not entirely.

I woke up with a swollen face again this morning, which I haven't had for a long time. It is mostly around the neck and jawline that gets swollen and it restricts my breathing a bit and makes my voice hoarse. Dean says he can always tell by my voice when I have facial swelling. It is usually worst in the mornings when I get up and gradually lessens throughout the day. Well most of the time, today it doesn't seem to be improving much.

The kids have been home for the holidays and despite all their Christmas gifts have been getting quite bored. I think they are looking forward to going back to school in the new year. As much as I love having them home, boredom complaints do get a bit tiresome when there is sooo much they can do!

Between the constantly changing weather and the kids being home I haven't done much designing at all this month which is a shame. It keeps me sane! I have found myself reading a fair bit and needing a lot of naps which I am sure doesn't help with the kids boredom. I have however learnt that when I am feeling tired, it is best to give in and take that nap rather than push through the tiredness as it just makes things worse.

I have managed the odd scrapbook page which seem to be easier to do when I am not feeling as well as I can do them on my laptop on the couch. I can design some small things on my laptop, but prefer my faster desktop and bigger and more accurate screen to design kits on. That means of course I need to feel well enough to sit at my desk which I can usually do for no longer than an hour at a time even on my good days which seem to be fewer and further between of late! I am looking forward to winter when my energy levels increase a little.

I am feeling a bit housebound of late, but most of the time getting out of the house seems more effort than it is worth. A short trip to the shops results in my feeling shaky all over and spaghetti legs as if I have just run a marathon. I sweat till my hair is drenched and get really faint and of late even start to loose my hearing. It drains what little energy I have and I immediately need to go and have a nap when I get home. Crazy stuff! 

I am so grateful I can at least digital scrapbook and design even if it is sporadically. I also grateful that Dean is so understanding and the kids are great and although they do complain at times, help out around the house a fair bit. I always feel guilty that they have to do so much but tell myself at least they are learning life skills for when they eventually leave home.

Wow it has been a long time!

You may have noticed I stopped posting my design posts to this blog and the reason is I just hadn't been doing any personal posts. I really just did not have a lot to say and I guess a bit overwhelmed with dealing with my auto immune issues. It didn't seem right to have only design posts on this blog, which is supposed to be my personal blog!

Things are going a bit better now in that regard because the kids are now catching the bus to school which is not only giving me more time, but more energy! Driving them to school in the big cumbersome van was really an ordeal for me and I often needed a nap afterwards! Thankfully we now have a new (to us) car and it is so much easier to drive and doesn't tire me out near as much. So when I do need to do the school runs I don't get quite so exhausted! Another plus of the kids taking the bus is with the extra energy I am able to get more designing done. WAHOO!!! Gotta love that!

I am thinking this blog is looking a bit dated so I will have to update it at some point and I am hoping to start posting more too! I guess with facebook, being able to post stuff there, I don't feel as much like posting to my blog, but I really should!

We had to put our cat Vincent down last week. He was 17 and in so much pain from arthritis his teeth and also incontinent and just not happy anymore, so we finally had to make the decision to put him down. I did a quick layout of him that night.

Polly seems to be missing him too. She hasn't been herself the last week. We are all keen to get another kitten now!

I have also found a new fun hobby and have become addicted! I have the hipstamatic app for my iphone and I absolutely love taking photos with it. The effects it creates are so cool and fun! I am thinking about doing P365 with it soon because it is so much easier to take cool photos of ordinary things. I am planning on posting some of those photos to this blog in future as well.

Feeling better about things..

I thought I would post another update, I am going to try hard to keep up to date on my blog posting. I can't let my daughter show me up! It is school holidays at the moment and I started a new blog for her to give her something to do, and she is taking to it like a duck to water. I have lost count of how many posts she has done! It will be good practice for her writing skills and her typing skills and she seems to really be enjoying it!

I had my 3mthly appointment with my rheumatologist and he agreed to take me off the methotrexate. I feel so much better off it. My pain is slightly worse on it so far (could also be coincidence) but at least now I have a little more energy and can think straight! I am feeling much more hopeful about getting things done and doing more designing. I am glad to not be on such a toxic drug anymore as well.

The kids have been having a wonderful time over the holidays and are only just now starting to be at each others throats. We went to the movies to see Despicable Me in 3d and they LOVED it. They have also been playing with clay and making things out of clay to paint and put on display. Earlier in the holidays they made some sock puppets. They turned out really well and they had lots of fun making them.

I have been feeling quite well over the holidays, I think it is the extra sleep! Sleeping in seems to make a big difference for me and I don't need naps at all when I sleep a bit longer. I need to try harder to go to bed at a decent hour during the school term!

Kyan is growing up so fast and slowly stopping his tantrum throwing. He still throws the occasional tantrum when he is tired, usually over food, but they are fewer and farther between now thank goodness! He is becoming such a delightful and happy little boy and I am so proud of him.

Jasmine is heading fast into growing into a tween. Eeek! It is going way to fast for me, but she has a good head on her shoulders and is very sensible thank goodness. She is still thoroughly enjoying school and continues to get really good marks. I hope she keeps up her love of learning as her school years progress.

Dean is still working hard and I am grateful for how much he does. I can't believe we have been married for 16 years. What a milestone in today's day and age! I wish I could do more to help him around the house but maybe now I am off the methotrexate that will be a little easier.

Anyway, a bit of an update on all of us, it has been such a long time since I have done one of those!

Feeling Frustrated

It has been a long long time that I have written a personal post on this blog. I started a new blog at robyngough.com with the intention of using it for designing posts, and using this one for both designing and personal posts. The idea being, that those who didn't want to hear my drivel about my life could just subscribe to or read my other blog. However over the months I just haven't had a lot to say on a personal basis.

I think it is because I am just struggling with the day to day right now without knowing how to make things work. Some of you may remember way back when me mentioning that I was no longer working full time outside the home and would now be concentrating on designing. This was of course due to my illness making it impossible to work reliably on a day to day basis. With designing at least so I thought, I could at least work when I am well and take it easy when I am sick. That still remains to be the case and was a great idea in theory, but rather than managing this way I have found myself getting sicker over time and finding it harder and harder to do much designing at all. I do think that some of the drugs I am on may be at fault. I very much think that the side effects are as bad or worse than the actual illness itself! Methotrexate is nasty stuff, the drug they use for chemo. It is an immune suppressant, and on the lower doses it worked fairly well, but I got worse and they increased my dose and now my side effects are as bad or worse than my symptoms.

I see my rhuematologist at the end of the month and remain hopeful that he will help me find a better treatment. He did say there was something else I could try.

Previously I would normally get at least 3 or 4 days a week where I could design, and that was working fairly well, but after my symptoms got worse and my side effects increased, I am lucky to get a day a week where I can function effectively. A lot of the time I don't even get that.

I suspect a great many people think I am exaggerating about my symptoms. It is really hard to explain what they are like. Every morning I wake up as tired as I was when I went to bed, my joints and muscles are stiff and take at least an hour to loosen up. Don't ask me to do anything before I have had breakfast and my prednisone and anti-inflamatories because I am likely to jump down your throat. My body just manages to function enough to get my breakfast and drugs and then I need to rest to let my body recuperate from lying still all night. Wierd I know.. but that is my life now.

Back when I still had good days the sleepyness would lift and I could do enough physically that I could get a few things done each good day. At the moment, the sleepyness doesn't leave and my brain feels full of cobwebs and I can't think straight. My body feels like lead a lot of the time and there are many days that the smallest amount of exertion, such as putting on the washing will wear me out and exhaust me.

I attemped some sweeping a few days ago, and did a really awful job, I just wanted to sweep the worst of it so the floor looked a little bit better. Well in the space of 30 mins I needed 3 breaks to sweep up the worst of two rooms. That didn't include under things or corners you can't see, just the most visable areas where the most dust was. I was huffing and puffing like an old woman. Some people will probably think I am just lazy and unfit I guess, but I know better. Two days later my arms were still sore from sweeping! My body is so wierd!

There was a time where I would run up the stairs every day when I went to work on the 1st floor. I haven't been fit in a long while but running up the stairs was not hard for me. In the last year I was at work, running up the stairs became harder and harder and eventually I had to climb up them slowly. That is not my body being unfit, that is my body going on strike.

I am home during the day but am unable to do the housework. Dean has to do the majority of it, although I might wipe a bench here or put on a load of washing there. He is so busy he has a hard time keeping up with the housework and it frustrates me to no end that I can vacume or sweep or mop. The floor is dirty and I can't do a thing about it. I hate it!

It frustrates me even more that a non physical task of designing most of the time eludes me. I get stiff and sore very quickly sitting in my desk chair, I get headaches and my brain just won't function with any clarity. Instead of thinking straight, my thoughts are jumbled.

I feel grateful that I can still keep in touch with family and friends on facebook. I can post a sentance here or there on my laptop. It is only on my worst days that I can't manage even that. Some of my worst days involve one or two naps and watching tv like a zombie in between.

I am so grateful that because I am no longer working outside the home, I can spend more time with the kids, I just wish I could work a little more inside the home.

Thank goodness I am able to be supported by the Disability Pension because without it right now we would be in all sorts of trouble. I remain in hope that some day we will no longer have to depend on it and I can work more and replace my disability income with designing income. I long to be productive again and long to design more. I love it and feel blessed I have the opportunity to do it, I just wish I could do more of it!

I hate that this post has turned out so woe is me, but it is good to get it out. I am normally a glass half full kind of girl, but there are times that my limitations get me down a bit.

For those of you who are familiar with the spoon theory, I just don't have a lot of spoons right now and I hope in time I will have a few more to spread around. Wouldn't it be wonderful if I some time went into remission, or there was some new treatment that could help me live a normal life again. You never know I guess! I the mean time, I am so grateful I have such an understanding husband and such forgiving children who do their best to be quiet when their Mummy needs a nap.

I hope to try and blog a bit more, maybe it will help to get my feelings out a bit more.

The Spoon Theory

I stumbled across The Spoon Theory and it is such a wonderful way to explain dealing with my Auto-Immune issues.  I don’t think mine are QUITE as severe as hers, but fairly close.

So many people don’t get that I am sick because apart from looking pale at times, I don’t really look sick, and it is really hard to explain. I have on countless occasions knocked back a social event because I just wasn’t feeling up to it. I feel at my worst in the mornings after I get up and in the evenings after work and while somewhat better during the day, if I overdo things I pay for it later.

Now most of the time, if I start to feel it I just stop as I know it will only get worse later if I push through it. Sometimes (like at work) I have to do it anyway because it has to get done and I do pay for it later.

Anyway, enough rambling, I thought this was a great way to explain things. Have a read…

The Spoon Theory by by Christine Miserandino www.butyoudontlooksick.com