My blog is mostly about how I feel and what I think. So, I decided to ask my husband how he has felt or feels about me being ill. I actually learned a few things that I didn't know and maybe you can share this with your spouse or loved one.
Q: Before I was sick, how was I, our marriage and life?
A:You were an outdoor person. Camping, yard work, fun with the kids. Lived at walmart lol. You were an extrovert. In the beginning, it was all about each other and the kids. So much love and fun. We never argued or fought. We are not well off but we had what we needed. We saw eye to eye on everything. We understood each other. We did what we wanted.
Q: When did you start noticing a change in me?
A: When you were 32. Rashes came more often. Sweats and RLS and PLMD. Heat was affecting you more. Fatigue was more prominent with heat. You would crash, sleep for 3-4 hours after an activity. You were still independent, mobile and doing your own thing. Good agility, dexterity, cognitive ability and multitasking skills were still there. Then it started to slowly progress with an increase in fatigue, muscle spasms and cramps in your back. Optic Neuritis hit Christmas eve. Then the big flair 2 years later that ended your career.
Q: What worried you the most in the beginning?
A: The fatigue and lupus in the beginning. We were not sure if you had SLE and really couldn't get answers from doctors. This sparked worry and depression in you which created barriers between our relationship. You started sealing yourself off. You didn't want to talk about it, ever. After the optic neuritis, and many, many doctor visits and still no clear diagnosis at that point, you closed yourself off to everyone. You felt as though you had to explain how sick you were, repeatedly. You were trying to get people to believe you because you didn't physically appear sick. To me it was confusing because the doc say it was depression, anxiety, you needed to reduce stress and exercise and you would shut down and get pissed off. Then the kids didn't know what to do. The kids were young and they didn't understand that this is a demyelinating condition. Kids thought you were going to get better. "When is mom going to get better" Sis would ask me. But to me our love seemed to be behind barriers because you were trying to except everything that was going on. This fueled your depression. So, that shut me out even more, Our communication and understanding of each other started to deteriorate because I wanted in and you wouldn't let me.
Q: When did you notice a cognitive decline
A: Right before the big flair. You would come home from work crying because you could no longer multitask, forming words and thoughts, memory was slipping and you had to actually think about walking. That was very disconcerting due to the fact that the cognitive decline followed your optic neuritis flair and you had to think about taking steps. Moving your legs and you needed assistance with walking. Your short term memory is slipping. You repeat stories, conversations and incidents. Worsens when you are fatigued. The first thing that came to my mind, MS, which my uncle passed away from. For me, if it is MS, is the long term, slow progressing MS? Is it the rapid progressive MS where we only have a few years or was it SLE? I didn't know how to explain it to the kids.
Q: The big flair
A: That day, I was really, really worried because it hit you so fast. I was thinking SLE or rapid MS. We had nothing set up. We were not ready for it. We thought we had a few years. Financially, because that is the jump in my mind because you were the breadwinner of the family and rushes through your head when this happens, "Holy shit! I'm freakin out!" In today's society, you need 2 paychecks to stay afloat. What are we going to do? Depression increased because you could no longer work. Cognition diminished significantly. You went to a multitasking situation to one thing at a time.You had to go from thinking like a woman to thinking like a man! LOL One thing at a time. You could never get rested. Fatigue was getting worse along with the pain and muscle cramps. Weird sensations in hands and legs. Barely walk to the bathroom without assistance and walk back to bed.
Q: My depression, anxiety and short fuse...
A: One fuels the other. There were days that depression was bad, anxiety was off the chart and you're fuse very, very short fused. Any noise from the kids would set you off. We needed to get the depression under control because it was really going to hurt our marriage. Communication was nill. Seemed like a "need to know" basis. You wouldn't tell my unless you absolutely needed to tell me. You are the
QUEEN of bottling it up.
Q: Our sex life, then and now
A: Before...WOW and YES PLEASE! That was before you got sick. It was extraordinary! Slowly decreased as your illness progressed. Now... if the moon and the stars align perfectly and the mood hits you just right...I might have a shot or I'll get shot down, which is probably more likely. You are rarely in the mood. We can't do it in the morning because that would physically ruin the rest of the day. By the time evening comes around, you are too tired, in too much pain or just not interested. But when we do, we have modified our sex life to suit your abilities. (This is Jenn...what hubby is trying to say is that we have breaks for me to rest. Try to fight off fatigue and the "weighted" feeling. Don't forget about the
vertigo at times. Certain positions are impossible and frustrating, so why even bother with those. We do have great "modified" sex...when I'm actually in the mood)
Q: And now, after all of this...how are you feeling with everything?
A: Our relationship changed after a big blow up. "Blow up" was due to many factors. Money, depression, medication, loss of your independence, loss of your control of your life. Since then I have been the caregiver, father, chaperone, breadwinner, husband, shoulder to cry on, friend (after KIM of course lol). I think we understand each other more. Now that the kids are teenagers and they have dealt with illnesses of their own, they have a better recollection of what mom goes through. They also have a better understanding of your abilities and try to help you as best as expected from a teenager lol. Our marriage is good. We are moving along. No severe progression of your illness at this time. We are grateful for that. We finally found a few doctors who are helping you get sleep, pain relief and your depression under control.
Hugs!!
Jenn
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Ever since the tragic passing of the great Robin Williams, depression has come out of the shadows. Now, Wayne Brady and other famous people are "coming out". People think "Well, what do they have to be depressed about? They are famous and rich!". Depression is not that simple. I have Major Depression.
I have for years. I take medication daily to help but it doesn't take
it all away. A person who has never had depression will NEVER truly understand what it is like. It is NOT just feeling down or blue. It is not about your material possessions, how much money you have or how well off you are. It is this deep down, sorrowful, gut wrenching sadness. Sometimes, it's not sadness. Sometimes it's anger, feelings of worthlessness and having no purpose. You don't want to get out of bed. You don't want to go out of the house. You don't eat. You just want to be left alone, in a dark room to hide under the blankets. It can have physical effects too. Causes you to have pain, migraines, muscle spasms and not make you physically able to get out of bed. Seriously! Ya know, I really didn't understand how a person can be so depressed that they physically could not get out of bed until it happened to me. I, truly, physically, could not get out of bed. I had just lost my insurance and was in the process of getting another. And of course, I ran out of my medication. The cost was over $350 for a month's supply. We could not afford it since I could not work anymore because of Fibro fatigue, pain and the unknown demyelinating condition. So, I was cold turkey off my antidepressant. (Never ever, ever, ever, EVER do!) That was the most God awful experience in my life! When taking Effexor and you stop it cold turkey, you not only create a MAJOR depressive episode, you have physical withdrawal symptoms. Nausea, dry heaving, tremor, electric shock feeling. I could not get out of bed. My body would not let me. I cried so hard and I don't even know what was wrong. I was so distraught. I would not and could not eat because I was so nauseous. I just cried in my bed. After a 2 days of this, my hubby knew I needed help but felt stuck because of no insurance, lack of money and was in fear of the worst. So, he scraped together enough for a weeks supply and prayed the new insurance would kick in before I ran out. Luckily, it did kicked in.
