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.

5 thoughts on “Feeling Frustrated

  1. ReneT

    Oh Robyn!  I think I shared with you a long time ago the 6 month struggle I had with pancreatitis caused by a birth defect.  I felt exactly the way you feel for those 6 months, so I know what you are talking about.  I felt guilty that my husband had to do most of the housework as well as work sometimes 80 hours a week.  I thank the Lord that it only lasted 6 months.  I was at the end of my rope, so I can imagine what you go through, only you have been doing this for so long.  I am so so sorry that things are difficult for you and your family.  I am praying that you will find some joy on your darkest and most sick days and also that a cure can be found that will help you have a normal life again.  Hugs.  Rene

  2. clikchic Post author

    I do remember you telling me Rene. Thank you so much for your understanding. It really helps to know there are people who understand. There are so many that don't and make comments that make it clear they think you just don't try hard enough, so it means so much when there are people out there who do understand.

  3. Elizabeth McCoy

    GREAT BIG HUGS!!! I'm so sorry to hear of your struggle. I still do see your glass half empty attitude in your post. Really you have a terrific attitude and desire to achieve despite the physical limitations you're dealing with. That's inspirational!! I sure hope your doctor has a better solution for you so that you can have time to do the things that you love and the things you want to do like sweeping 😛

  4. Jess Watson-McPike

    I just wanted to let you know that I stumbled upon your blog when I did a Google search for MCTD. Reading this post made me cry. The words I am about to write may or may not be words that you want to read, but I feel compelled to share – especially since you are feeling that some people may think that you are just being lazy.
    I know you are not just being lazy. My mother was the strongest, hardest working women you would ever meet. In her early thirties she was diagnosed with sudden-onset level 3 hypertension. My mother had no family medical history, as she was adopted and in Michigan in the 1960's, the biological parents could choose to keep everything anonymous, so it was particularly difficult for doctors to try to figure out the underlying cause of her sudden high blood pressure. Then other symptoms slowly started piling themselves onto her; severe spasming pain under her left breast, shedding unbelievable amounts of hair when she showered, feeling as though her arms were too weak to hold them up to wash her hair, being unable to do a load of laundry without having to sit down and pant (with sweat running down her face), etc. The list is far longer than what I have written, but I think you understand. After seven years of bouncing from doctor-to-doctor, specialist-to-specialist, they finally thought they had figured out what was wrong with her: Lupus. She called me and the first words out of her mouth when I answered were, "Jessi, what is Lupus?" Although a difficult diagnosis to accept, we were grateful that there was finally some sort of diagnosis because so many doctors had tried to pass it off as stress. Then after a couple of months of the Lupus diagnosis, the Rheumatologist retracted the diagnosis and then diagnosed her with MCTD. This diagnosis was made only two months prior to my mother's death.
    On December 11, 2008, I was at my parent's house and my mother was (as usual) sick. She was always sick, so no one would think to worry any more than usual, right? My father was at a friend's funeral, about twenty miles away. Mom and I watched a little TV and then I showed her the pictures on my digital camera of the Christmas decorations I had put up the evening before. She told me she didn't feel well and she was going to lie down. I went to my parent's basement to gather some old board games because I was in charge of bringing the games to the Christmas party my employer was having. I tripped as I came back up the stairs, and the games went flying out across the floor. I started to pick them up, looked over at my mother, and immediately realized something was wrong. She was not reacting to the fact that her daughter – her baby – had fallen. I walked over to the couch, where she was sitting Indian-style with her elbow on her leg and her hand on her forehead and I asked if she was okay. She nodded yes. I asked if she wanted me to call Dr. German (her Rheumatologist). She shook her head no. I went to resume picking up the pieces to the games and the worry started to build. I walked over to the calendar and grabbed Dr. German's card and went upstairs to call. I could not get through. I called Volunteers in Medicine (the group that mom was a patient of) and could not get through. I could not get through to anyone. My parent's home is an open floor concept, so I could see into the living room from the upstairs. My mother was now up and walking around, trying her best to suck air in, but obviously having difficulty doing so. I told her not to worry and that I was calling the doctor. She just nodded. My mother, the strongest woman I've ever known…nodded when I told her I was calling the doctor. This is the woman who would say, "Don't you dare call that doctor! They have more important things to take care of!" Then I knew something was terribly wrong. As I called the ER, I glanced over and a plaque that I had gotten my mom for Mother's Day caught my eye and I thought, "Dear God, what would I do if I lost her today? I'm not ready." I tried to call my father to no avail. I flew down the stairs and grabbed a pair of pajama pants to put on mom, as she was only wearing a nightgown and it was the middle of December. At this point she was sitting down, again Indian style. I asked her for her leg, she obliged. I pulled one pant leg up and then said, "Okay, I need the other one." Again, she dropped her leg down and allowed me to put the pant leg on there. Then I said, "Now, I need you to stand up," she did and as I pulled the pants onto my mother's body she looked at me and said, "Jessi, what's going on?" All hell broke loose from here on out. My father called, I told him mom couldn't breathe. He told me to call an ambulance instead of driving her to the ER. I called 911 and one of dad's friends called 911. They said they'd be there as soon as possible, which isn't very quickly considering my parents live 13 miles from town. Mom started to panic and was trying to breathe and saying, "Jessi, I can't breathe. Something's wrong." I tried my best to remain calm for my mom. I didn't know what else to do, so I called my mother's sister and held the phone to mom's ear while her sister spoke to her in a soothing voice and told her to allow the air to come to her and to not fight for it – just let it flow. My dad made it home before the ambulance did. He told me to run outside and wait for the ambulance, which I did. I could hear the sirens, but their GPS system had broken down and they could not find our home. I told them to keep coming until they saw a female standing in the middle of the road. Dad came to the end of the driveway and said he'd wait and told me to go back in there with mom. I kept promising mom, "They're coming. They'll give you a breathing treatment. You WILL be better. They will be here any second." Seconds turned into minutes and I felt as though I was the one letting my mom down because I kept telling her they would be there. They finally arrived and got her to the ER. She seemed a little better at first after they gave her some oxygen. Then everything went down hill again. My family begged, pleaded, screamed and cried over an hour in the hospital for them to help her and we kept being told that she was having an anxiety attack. They triaged her for an anxiety attack. Security guards and police officers were called on us because of the meltdown we had when we saw her eyes roll in the back of her head. It wasn't until then that everyone realized that it wasn't an anxiety attack after all. I had even specifically asked the doctor whether or not he knew anything about MCTD. I told him that I was concerned about a heart attack or pulmonary embolism because those are common causes of death in individuals with MCTD.
    Do not let people make you feel as though you are lazy. Do not let people make you feel as though it is all in your head. Do not let a doctor belittle your symptoms. Only you know your body. Only you know how difficult it is for you to start a load of laundry or sweep the floor. The battle you are fighting is a difficult one and I am well aware of that. You have my thoughts, prayers and sympathies.
    My mother allowed people to make her feel as though she was crazy. She allowed them to make her second guess herself. She allowed them to make her cry and say, "Jessi, what if it IS all in my head? What if my body feels this bad because there's something wrong in my head and I can't control it? What if it turns out that's what it is and then all of you will hate me for it?" Well, her autopsy proved that it most certainly was not in her head. Her lungs were the consistency of the average person's liver. Her heart was more than 75% blocked because of atherosclerosis.
    I hope I have not written anything to scare you. I just want you to know that there are people out there who understand what you're going through. And I will be remembering you in my prayers because you have touched me very deeply. I hope we can keep in contact.

    By the way, my mother was an artist too. :) Primitive, Americana, colonial, etc. :)

  5. clikchic Post author

    Thanks so much for your lovely post Jessica, it helps so much to know that there are others out there who know what I am talking about and understand!

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