anna
Forum Replies Created
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I’m not sure if I should be posting on this one, since staffing is quite different where I live, but the only thing that has made this nightmare a little less insufferable for me was establishing a long-term professional relationship with a reliable agency. They know my needs better than I do by now and they send me the right person most of the times. The only problem is that this might take weeks or even months depending on the time of year. Tourism is a big industry here, so they all prefer seasonal employment in hotels, restaurants and bars from May till October. Their income, with tips included, is double as high as what I could possibly offer. So, you only stand a chance of hiring someone in Autumn and, even so, there’s always the risk they leave you in Spring to embark on exciting adventures on the scenic Greek islands! I’m not much help, I know, but I hope you can take some comfort in knowing that things are just as bad in other parts of the world too lol!
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At the ripe old age of 37, I’ve already made a list of tested accessible destinations, so this isn’t a problem anymore. Fatigue forms such an integral part of my routine that it’s not a cause of stress either. I know I’ll get tired, then rested, then tired again and so on. In general, anything that can be solved with meticulous planning doesn’t stress me out. The only thing that worries me is catching a virus because it’s out of my control and that can be really disturbing for a control freak like me!
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I get sinus infections too, but they usually come after a cold. I think it’s because I spend much time lying down and the mucus doesn’t drain properly – if that makes sense. I’ve noticed, however, that as long as I keep the airway clear with nasal rinses and sprays for the first 3-5 days, the recovery is much quicker.
I keep wondering if there’s any point in taking extra measures against viruses when the people we live with are getting exposed daily anyway. I’m still avoiding dining indoors -which is a real bummer given that most of the socializing is usually done over a table -and yet I got my dad’s (fortunately mild) cold. Not to mention how much worse it is for those of us who have children in the family. My nieces fall sick literally every other week! They live in another country, but they’re coming home for Christmas and the odds are that they’ll be contagious when I see them.
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Great topic! Like you, I have an older sister who doesn’t have SMA. We used to be very close, but she moved to another country for studies years ago, settled there and had a family of her own. We’ll always be family, obviously, but there was no way our relationship wouldn’t be affected by distance to some extent. She, too, assumed the responsibility of keeping an eye on me when we were kids, although I don’t recall my parents asking her to, but I don’t think it ever stopped her from living her own life and having her own friends.
I also have two very loving parents who are always there for me and try their best to keep me safe, healthy and happy even when they do it the wrong way. Judging by what I see in other families, it’s not to be taken for granted.
I’d like to have more connections, but my way of life doesn’t really encourage forming new relationships. That makes the future look somewhat bleak, but I keep telling myself that worrying too much about the future can ruin your present.
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Wish I had a remedy for anxiety, I’d be a zillionaire! Just to add to what’s already been said, try to give your positive thoughts too the importance they merit. For instance, I think I read in your column that you got a mild cold recently. I know it doesn’t mean much, but doesn’t it feel a little reassuring knowing that your body can still fight viruses effectively? This is my main concern because I haven’t been sick in four years, so I was thinking that catching something mild would, at least, benefit my mental health in a way.
I tend to overthink endurance too. At my sister’s wedding I spent 11 hours in my wheelchair, something I hadn’t done in a decade. I was so worried I wouldn’t be able to withstand it that I even booked a room nearby just in case I needed to sneak out for a couple of hours and get some rest. I didn’t even feel the need to use it! Was it the adrenaline? Or the copious amounts of alcohol lol? Or, more likely, we’re stronger than we think. I had lost my sleep for weeks over nothing. Anxious thoughts distort reality, but, fortunately, they come and go quickly. Let them do their job and keep on doing yours.
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I’ve noticed that some people are surprisingly cool about this stuff while others just feel awkward even when I don’t. Most of the time I avoid sharing too much though. People tend to think that we live our lives in misery, constantly ruminating on our innumerable health issues and challenges. I used to believe that if they knew more about my disability, they would realize that my life can be both difficult and fulfilling just like theirs. Clearly, it doesn’t always work this way. I guess you have to choose your audience to open up to.
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I don’t feel comfortable without a mask indoors either, so indoor dining is still out of the question. The only change in my routine is that I occasionally have people over without a mask provided that they feel healthy. I wonder if I should get another booster before autumn, but I’m not sure it’s worth it now that summer is approaching. Besides, there are worse viruses going around this year, albeit less contagious.
What I find a bit worrisome is that, although the epidemiological data is not much different than it was four years ago, we still don’t feel ready to resume normal activity. Is it a matter of time or are we permanently damaged??
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I can’t talk about gains as I’m only starting the treatment now, but no one recommended modifying my exercise regimen in any way. I’m getting PT twice a week in 45 min sessions. I thought it wasn’t worth my time and money (insurance covers only 80 sessions per year) until the pandemic hit and had to stop. The impact it had on my body made me realize I was wrong.
OT is kinda pointless for me, as my mobility is very limited now, but was quite helpful when I was your son’s age, and fun physical activities were even more effective! I would encourage him to try anything: painting, drawing, crafting, swimming, adaptive musical instruments… as long as it keeps him active and engaged. In my experience, both PT and OT can bore a teenager to death!
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Even if we can’t raise them from the dead, I hope we can at least keep the ones that haven’t died yet alive. Anything that can help with that is definitely worth a shot. Thanks for all the info!
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That’s really frustrating! On what grounds did they deny it? Do you pay them an annual fee? My agency gets paid every time I hire someone through them, and if a PCA they send me leaves within 6 months, they send me another one at no extra cost. This way they take a keen interest in finding me reliable candidates (to the extent that they exist).
Winters are getting warmer and warmer every year. The impact of climate change I guess. The lowest it’s hit so far this winter was 9 C (48 F). And that was only for 3 days. Now it’s back to 18 C (64 F).
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In this case we’ll do it to improve my swallow, but they can be used for any muscle that has atrophied due to immobility. NMES is applied using electrodes to send electric impulses to the muscles and facilitate contraction. NT is basically sticking tapes that stretch and expand. Not sure what effect that could have, otter than create more wrinkles on my face…
The thing is that when the atrophy is caused by any other cause, e.g. an injury, the muscle hasn’t lost its ability to regenerate. When it comes to degenerative diseases on the other hand, that cause neurons to die, I’m not sure there’s anything you can do to revive them.
I’ll post updates here anyway, unless of course they fry my brain in the process. My therapist also said she would send me more information to discuss with my neurologist, so I can pm you whatever she provides me with if you’re interested.
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In my understanding, VitalStim is a brand of NMES. Did you get to choose, or does it depend on what the therapist uses? Do you remember if it was twice a week for you as well?
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I’m sorry it ended up that way, I’ll be sure not to let her feed me any hard stuff! Do you mind sharing how many sessions per week you had? The therapist suggested two, but I don’t think I can fit more than one into my schedule, nor can I afford it.
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Certainly. It seems like the pandemic brought more restrictions to my life, as if the old ones weren’t enough. Sometimes I feel inclined to just go back to living my life the way I used to and whatever happens, happens…
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Yes, wearing a mask seems like my only option since they’ll probably be sick when they come. The alternative is not to see them at all and it’s just so sad because I only get to see them twice a year for a few days. It’s not that we can reschedule and wait for them to recover.
It is Thanksgiving though, so I’ll stop whining and count my blessings. Hope you have a nice Thanksgiving, even though it didn’t go as planned!
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Tough balance indeed, but I think we’re managing. When they poke their nose too much, I do the adult thing and lie, so we’re all happy haha!
Distance takes its toll on all relationships. I’ve visited her a few times, but traveling by plane is very tiring and stressful for me. She’s the one who usually comes back home for holidays, but now that she has two toddlers, trips aren’t easy for her either.
The only tip I have so far for meeting new people is go out as much as you can. Not that I’m following my own advice with great success…
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This is the burning question of my entire life (regarding any virus) and I doubt it will ever change. I just miss the pre-pandemic version of me when every day was a calculated risk and I was ok with it.
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Their personality I guess. Some people are just more laid-back about everything while others are too scared to deal with unpleasant situations they don’t understand and they can’t handle (not that anyone asked them to), so it’s easier for them to look the other way. That’s why I choose the audience. I’m always willing to share, but not everyone is receptive.
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My GP says that COVID is a lot milder now than it was 3 years ago and that, if I think I can be reasonably cautious and avoid exposure, I could wait until autumn. I haven’t discussed it with my pulmonologist yet, but I know he’s generally very strict about being up to date on all types of vaccines, so I expect a different advice…
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That would work for me because my meals are usually small and frequent. Thanks again!!
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So you take it after breakfast. They tell you to take it after a meal, but I’m not sure how big the meal should be. I mean does my morning yogurt even qualify as a meal? It’s trial and error I guess. I love oats though, so I’ll definitely try that! And yes, it’s better to be on it anyway and hope for the best. You never know how you’d be without it.
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Thanks a lot Tammy! It certainly is comforting to be reminded that every case is different. I hope the treatment is working for you!
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If it’s become part of your routine and doesn’t cause any other issues, it’s fine I guess. That’s what medications are for!
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Thank you so much for your long supportive post Susana!
I also have chronic constipation so, whenever something is wrong, food finds an easier way out through the mouth! It’s interesting that taking it on an empty stomach works better for you because it is advised to take it after a meal and preferably early in the day. My main meal is lunch, but I want to avoid taking it when I’m full, so I might try breakfast instead.
I’ve set the bar very low, so I’m not in for a big disappointment. I know it doesn’t turn the clock back, so even slowing down the progression would be a huge win for me as long as it doesn’t cause any problems.
I’ll take it step by step and get through it just like everyone else. Starting next week! I’ll be posting updates that might be of help to anyone else getting the treatment although you’re all veterans by now!