I Need to Exercise & Getting Ready for Summer

 

It is really annoying, everything has been so up and down, typical Multiple Sclerosis though right? I feel pretty good one day and then like total crap the next and then randomly good again. It does seem like being on the computer for too long messes up my vision and sometimes it takes a few days to stabilize which sucks because this is what I do and I am still not driving so the computer is really my only window to the world at the moment. Catch 22, I have to spend most my time on the computer because my vision sucks but spending time on the computer seems to make it worse. That’s MS though, unpredictable, up and down, catch 22’s, etc…

Now I noticed something the last few days… my legs have been feeling weaker and weaker, like, walking up the stairs has been much more difficult. Then I was looking at myself in the mirror (doing a post-Lemtrada self-check) and I noticed my legs looked a bit thin. I grabbed my thigh with both my hands to see how far around I could wrap my hand and wow, I swear I can almost completely wrap my hands around them! So clearly they are wasting away, most likely minor muscle atrophy from pretty much just sitting around for so much of this year! So I have been wracking my brain trying to figure out how to put some muscle back on because every little exercise I try feels substantially more difficult than I remember so that just kills my motivation because I hate working out as it is! But I have to because not only can I not walk as far but I feel so unstable! I feel like my legs are just swinging around when I try to walk and then it becomes a game of trying to not fall over. I feel pathetic… I know I shouldn’t but I do so I am trying to use that as motivation to do something.

That leads me to my next issue; summer. I live in Southern California about 30 minutes west of Palm Springs so when I say summer, I mean summer. Already we are hitting mid 90’s and summer means 100 to 110 and 115 is not uncommon and based on how hot it is already I am expecting it to surpass 115 this summer. This means my outside time is going to be even more limited! Do you know what it is like to get up at 4:30am, walk outside by 5:00am, and it is already 80? So I don’t have long to try to build my legs back up before I am just stuck inside all day and every day! Yes, I have a cooling vest and I know all the other tricks but honestly? They really do not seem to help, in fact, sometimes I feel like even the ice packs around my chest are trapping heat in!

I have a portable A/C unit for my room but the one I bought (last year) is not powerful enough to compete with the heat making it’s way through the walls and ceiling. At the time I think I just bought the cheapest one because it worked for my old room (and I have never really had an abundant amount of money) but my new room is much bigger and I guess the attic is not helping. So even on days where we are just in the mid 80’s my room jumps to 75-77 degrees no matter how low I set it. It’s like it can’t even just keep it at a steady 70, it just slowly rises 1 degree at a time and I have black out curtains to keep the sun out and I keep all the lights off but still… nothing. So I have been sort of panicking about summer, or the coming months really.

I want to get a new A/C unit that can handle the size of my room plus the heat coming in through the walls and the right unit is a little over $400. Not too bad but with pretty much no income it might as well be $4,000! So as much as I hate doing this I am going to set up a donate button here on my blog to see if I can raise enough cash to help me get a new A/C in time to try to survive the SoCal summer… I might only be able to put in $50 a month myself if I am lucky… But yeah, again, I hate asking for this kind of help but I am desperate… Once it hits 77 in here I have less than no desire to write so when my bedroom is in the 80’s? Not sure what I am going to do with myself because the only thing I was planning on doing was writing this summer… Catching up on all that I have not been doing on my blog. So, any help will be much appreciated, I’ll have that donate button set up soon. It’s not even that warm right now but I just can’t think right…

OH! I ALMOST FORGOT! I got my last MRI on a disk but I forgot to check the box saying I want the report as well; I actually can’t tell if certain things are better or worse so I will not be posting the images until I review everything with my neurologist so I don’t jump to any conclusions because this is the first MRI I have done that I just can’t really figure out what is going on… So more on that soon!

6 Responses to I Need to Exercise & Getting Ready for Summer

  1. Esther Kim says:

    Hi Matt,

    My name is Esther and I am an Occupational Therapy Student at Loma Linda University. I found your blog to be very insightful, intelligent, and curious. You definitely have done your research about living with MS. I find your posts to be very raw which speaks to the truth of what you are undergoing physically and mentally. Individuals like you can bring more awareness for OTs to advocate for individuals who are battling MS as well as provide an online support group for MS individuals. Although OTs learn and try to apply therapeutic sense of self to our clients, honestly, we will never know how it is really like to deal with an illness on a daily basis. We all have our good and bad days as I noticed in your blog posts. Definitely, it is going to be summer soon in San Bernardino County and I despise the heat like you do :-). AC is a manmade godsend but I personally like air from nature without all the crappy pollutants. Once again, thank you for sharing your raw feelings about the discomfort and frustrations to manage living with MS normally.

    • Haha exercise during the summer is a worry not because I want to exercise outside, I don’t, it’s a worry because it gets hot in the house! BLAH… And yeah, I am like 15 minutes away from LLU so I feel yah, it’s miserable!

  2. […] it will also be in the 60’s and overcast. Perfect temperature and no sun, a little break from the SoCal heat that has been starting up, I love it. Anyways, I was doing some light gardening to try to wake […]

  3. Jacqueline Lopez says:

    Hello Matt,
    I am an Occupational Therapy Student from Loma Linda University :). I really enjoyed reading your blog! Thank you for being so honest, open, and straightforward. Just reading this blog alone taught me so much of how having MS impacts your everyday life and the struggles of it. I am so sorry to hear that it gets really hot in your room. I will be cheering for you to get a new AC. Here in Loma Linda it also gets crazy hot during the summer. I remember during Anatomy over the summer I would leave my dorm after taking a shower with wet hair and then go to class, which is like a 10 minute walk, and would have my hair almost completely dry. It is insane, so I totally understand. Regarding exercise remember that you can do exercise indoors 😀 ! Do not worry about rushing anything. I am an outdoor person so I really love the outdoors, however, with the weather down here in Southern California it is quite hard to go for a nice run or hike over the summer. Remember, swimming or the elliptical are good choices for summer activities. Matt, thank you for sharing your experiences with us. I really appreciate it.

  4. Michelle Borja says:

    Hi Matt,
    I agree with you! The summers in southern CA are horrible! I grew up in southern CA with parents who never turned on the AC cause it was way too expensive. not to mention it would break on us any time we used it for more than a couple hours straight. But I dont know what its like to deal with the heat and MS at the same time. I couldnt even imagine it. But I’m sure its extremely uncomfortable to say the least. I’m actually an OT student over at LLU and have been learning about MS this quarter. Reading through your blogs gave me a better picture of what you go through on a daily basis. And in the future, because of your stories and willingness to share this with us, I’ll know a little more on what my patients talk about and be able understand them a little better. Thank you Matt! ps. ice water and fans. lots of fans.

    • When it gets too warm for me, it’s like I start feeling really sick, like I have the flu; I just feel so weak I do not want to move, I am so fatigued and sometimes I get nauseous. It’s annoying because though I never like the heat I remember being younger and still going out with friends when it was 90+ and now? Being INSIDE when it is just 77 in my room I am destroyed! Lik what the heck? haha…. ugh…

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