Trigger warning: this post is about weight, body size, eating and other related topics.
I have a problem. During the last relapse, I lost quite a lot of weight. Almost a stone. Although I then regained some of it, my body has decided that nope, it wants to go back to losing again.
My M.E. makes eating a hard thing. I have constant nausea. The level of nausea changes through the day- there are times where it’s manageable, and others where I’m close to vomiting (and if I don’t realise it in time and take an anti-emetic, I vomit). This means that eating isn’t always what I want to do. I’m also unable to get around independently, so when I am hungry I can only eat either what’s next to me or what Johan can prepare for me. Also, when I do eat I get horrendous tummy cramps. Because of this, I only have one main meal a day, if that. I supplement it with lots of chocolate, sweets and fruit (easy for me to eat and can be stored next to my bed so I can get it myself if able to reach the drawer that day) but this obviously isn’t enough, as I’m still losing weight.
I’m still a healthy BMI (though obviously BMI isn’t everything) but I’ve lost all the padding so sitting and lying is now uncomfortable. When I was previously this weight, before M.E, I had more muscle as I was more active than I am now (Sammie was still little so I was carrying her around, walking a bit, and not spending my entire time lying down :P). Now the lack of padding means I get very uncomfortable when lying in bed or sitting in my wheelchair, and I don’t have the energy to move much.
Most of my clothes are now massive on me. When I last was going out a lot I was a size 16, so that’s what most of my clothes are. The same for my pyjamas and underwear and things. .I’m now a size 10. I bought some clothes on eBay that were an 8-10 and they fit. I need to sort my clothes out so I know what’s still suitable and what isn’t, and it will make things easier for my carers as well. I already know I need new underwear and pyjama bottoms especially, but once the clothes are sorted I will know what else I need. Unfortunately as I’m still housebound I need to order online, and delivery costs make it very expensive, and also means I don’t have access to charity shops and similar. I’m also having issues with my post that makes me reluctant to buy on eBay.
Since the last relapse I’m also able to see the change in my body. My arms and hands especially are noticeably slimmer, and my ring size has gone from a T(what my wedding ring is) to an N. Because my wedding ring kept falling off I’ve now put it on a chain around my neck as I was scared I’d lose it. Other people have noticed my weight loss as well, in photos and my carers. It’s kinda scary your body changing in front of you, when you don’t want it.
I think I need to see the doctor about the eating issues. I want to stop losing weight before it becomes a bigger problem. I’ve not been eating properly now for over a year, so it wouldn’t surprise me if I’m missing various nutrients and stuff. As part of the problem is Johan not being able to always cook and things, I think we need to see someone together to come up with a plan (it’s no good someone giving me a meal plan if it’s too much for Johan to cope with).
I’m glad I’m not underweight yet, but it’s bugging me and I want to stop it getting worse. I also need to come up with a solution to stop me getting sore when sitting/lying down. Another thing to ask the doctor.
@Dannilion hope it manages to get sorted x x
Oh dear! I’m sorry to hear you’re losing weight. Have you considered Ensure (or similar) to help?
I’ve considered it but as it’s been going on so long I really want to speak to a doctor (and preferably a dietician) first. They’re also rather expensive so getting them on prescription may be better.
Good thinking! I agree with you on all your points! 🙂
@Dannilion Danni, the combination of weight loss and mobility impairment means that you will now score high on the Waterlow pressure asses’t
@Dannilion …tool, which may make you eligible for better pressure-relieving stuff to improve comfort. Do you have district nursing at all?
I think nutritionist sounds like a good idea and that blackvandyke (on twitter) is right about trying different pressure care stuff.
I have actually put on weight in the last few months and yet my wheelchair cushion is getting more painful so I need to go back and get something with more pressure relief qualities and positioning.
Just because it’s likely to be directly related to your weight, doesn’t mean you should have to put up with it or that hte solution is necessarily putting weight on. you need what you need at any given time and should be given it.
Do you have an OT allocated to you?
Hope you get some solutions soon.
I think I technically have an OT, but she’s been waiting for Johan to email her for so long I’m not sure now. I’m going to be asking the doctor to sort out contacting her for me as neither of us are capable of doing it.
I’ve been asking social services for help with communicating with people and organisation for nearly 2 years now. Not happened yet 🙁
I wonder if there’s any way Johan could get some help with cooking? Even some cookery classes? It can be so hard to learn on your own.
It’s not that Johan doesn’t know how to cook, but that he gets completely overwhelmed by the idea and then can’t do it at all. It’s part of his executive functioning problems caused by Autism.
Cookery classes would help expand what he can cook, but I’m not sure they can help so much with him getting overwhelmed. I like fried egg and chips- Johan can cook fried eggs, and he can cook chips, but doing them both at the same time is too much for him.
I will discuss it with him though as it might help more than I think. Thank you 🙂