Thanks everyone for the comments on my last post. It really helps to know that I'm not alone dealing with this monster on a daily basis. I feel so grateful to have this group of friends who take the time to read my posts. Oddly, blogger isn't allowing me to comment on my own blog except as anonymous!! Strange.
Lots has been going on this past month and a bit. I'm working 1/4 to 1/3 time teaching online, doing dad care/company, and I had a friend visit. I also had my first cold virus since 2014, can you believe it!!!?? I know! I have a chronic low WBC so you'd think I'd catch everything (and yes, I am around people who are sick) but I just don't seem to get colds the last few years.
I did catch influenza last Feb. if you remember and was sick and then relapsed for a while. I even completely fainted once - and of course was alone at home. Thank goodness for my canine companion. It's strange to come to on the floor feeling disoriented.
Again, I also came very close to fainting a couple times with this cold virus as well. I'm on a low-dose beta blocker for POTS and am wondering if it lowers my BP enough to make the difference between black-out and faint?
Anyways, I've recovered from the cold and am doing better. I have had a tough autumn, though. I'm not at my worst M.E.-wise but I'm definitely worse than I was in the summer and that's been hard. I'm also feeling quite lonely much of the time.
On that note, I struggled a lot when my dad moved up here after my mom passed. It was a lot of extra work/energy helping him through the transition. He also refused to rely on anyone but me. He lives about 3 blocks away in a retirement home. He has an apartment/suite and they provide meals, light housekeeping, and do his laundry. They also provide some entertainment although much of it he's uninterested in.
I am his main support. He leans on me for errands, company, worries and concerns, managing his finances and communications, and basically most his social. On some level this is really hard. I wish he had a least one other person in his life he would lean on in any capacity rather than his sick daughter. However, that's not the reality. He does attend a program once a week for cognitive impairment and dementia - he doesn't love it a lot of the time (most folks who go are lower functioning) but I like having that little bit of support - the recreational therapists who run it are excellent, like really really good.
All that said, given I am quite alone much of the time (I have a housemate/good friend but she's not here much and when she is, she's busy or mostly keeps to herself) my dad is, in reality, my best friend. This is a pretty strange scenario given he needs care and has pretty significant memory loss and mild cognitive impairment. I worry a lot about what happens if (likely) he goes/dies before me? I try to just live day by day and not think about that too much.
Do you, or have you had to be a caregiver (as a parent, or for a parent) while living with M.E.? How do you manage? How do you cope?
A very brief scare the other day - my dad and I were cleaning out his garden box at his place/home, and he decided to get up into the box to turn the soil!!! I said "bad idea" but he was determined so I let him - he has so many restrictions/losses to his independence, sometimes I figure it's best to let him be. He did fine, but he stepped down, he fell and couldn't get back up. He is very stubborn about accepting help but I finally convinced him to take my hand and use the nearby bush and I eventually got him back on his feet unharmed.
Back to the nurturing - before I got ill, I thought I'd have kids whether I found a partner or not (I always figured I could adopt or foster or find a way). Then right after I turned 32 I got very ill - Mono - which never left and/or turned into M.E. and POTS. Not being able to have a child has been a huge loss/disappointment.
Still, I've found that despite illness, I have an instinct/desire to nurture. I think this is part of why I need a dog in my life. Having a dog is a two way street, my dog gives me as much as I give her. She takes the edge off my loneliness and I can love her without reserve and she loves me right back unconditionally. Likewise, despite all the trials and hardships and lack of support, I am thankful to nurture/care for my dad (and my mom at least a little before she died - I have many regrets, but I tried).
I doubt I will ever have a partner - I am home bound too often. Not to mention the fact that I'm too broken - physically and emotionally. And it looks like I will never have children. Lately this has translated into me wanting another dog - lol....but really - I really really want a puppy. If care and love in my life means more dogs, so be it. Yes, I am worried about the energy it will take, but we only get one life right? Given there is little human love in mine, why not fill it with the canine type?
Okay, so is this the most bizarre post ever?! - Sorry.
Indeed. For us often the experience & redesign of a sense of self can be hardest of all, almost a grief or holding pattern for the person that was yourself. Working as a carer for someone you love can also be difficult. As often it may not feel like true time spent together, it can be hurtful in moments of frustration with disability. Lots of adventure in the discovery of new things to enjoy though, for a moment of sunlight. Finding lots of mental cuddles when the physical ones hurt hubby too much. Learning to make flexible plans and managing other people's expectations (family & friends who did not understand). I imagine though my past role as carer was not as difficult as yours. FSHD was purely physical & allowed more independence then my more recent ME, well until his concussions from regular falls got worse and related medical conditions made touch more painful. However thinking on it mental health was the most important to keep up; a third party helpful to get support, self care, and good humour for both parties. Something that needed constant conscious effort. Each person & the sum, each couple, is different. With both of us now ill yet with widely different treatment paths it certainly made the journey eventful, turbulent and confusing.
ReplyDeleteYour plans for a pet are a great idea. Good for calming contact. Dogs can be a bit more work, they need more time outside, walks, training, more regular cleaning, but good for light exercise for some people. I found pets rats or a cuddle kitty suited me, (still have clear communication, cuddles and they clean themselves constantly). They were all house trained already, and litter clean ups were easier, (although agreeably on many days I would have trouble standing & would stumble a bit to feed, water, & litter clean). Good to have a backup care plan for a bad week, or turn. Unfortunately we had to give up our chooks to an aunts farm, as I was struggling to handle more outdoor work, cleaning the chook run & garden. Our kitty was adopted from a friend who had to give her up due to her fathers ill health & moving to a retirement home. The kitty has been lovely; very communicative and like an old lady from Miss Marple she loves proper order (like telling us off if we are up too late or too over tired). Also a friend uses her visits to a puppy enthusiast to get her doggy cuddle fix when she could not have her own. Much like cat/canine cafes.
I also remember a moment when the realisation we might never had kids hit me fully, (something we were hoping for when I was healthy & we could adopt, then I got sick). There is a lot of pressure on women not being complete or fulfilling their destiny in NZ without kids. NZ is a bit parochial in many areas and completely against our thoughts & beliefs so while we ignore much of what people say the pressure was still felt, (I think it goes away after a while but not sure when). But on the plus side not having kids is as research states the best thing we could do for the environment.
I wish you both luck on your path. Kia Kaha.