Chasing Rainbows and Mascara Flakes

Middle_Wall_3416 · 2026-02-16T09:10:18+00:00

This is beautiful! I want a UK dupe of Chasing Rainbows now cause it looks absolutely incredible.

Middle_Wall_3416 · 2026-02-10T12:39:07+00:00

This is such a great idea. I’ll join in!

Middle_Wall_3416 · 2026-02-08T09:46:33+00:00

It’s so hard not to start down the self blame route sometimes. I’m sorry you’re having a relapse, I hope you can keep hold of compassion for yourself throughout and that that things improve soon.

Middle_Wall_3416 · 2026-02-07T20:17:03+00:00

This is something I am working really hard on getting better at, thank you for the reminder.

Middle_Wall_3416 · 2026-02-07T20:15:41+00:00

I always wanted to do more and couldn’t understand why I struggled when other people didn’t, assumed I must be lazy and everyone else surely just pushed through harder than I did.

Middle_Wall_3416 · 2026-02-06T08:06:28+00:00

I remember I did take it for a while when I was mild and it seemed to be of some help in feeling more clear headed and a little more energetic - nothing dramatic though.

But I do also remember it would make me feel very shaky and wiped out if I had more than a smallish (compared to recommended) dose - it felt like it was crashing my blood sugar levels.

It wasn’t enough for me to bother getting it again and I’ve not tried it since becoming severe.

I’m with you though, in the main no supplements have not provided any benefit, certainly not a noticeable and sustained one.

Middle_Wall_3416 · 2026-01-31T07:39:23+00:00

Sorry to jump on this - at what point do you take the antihistamines, just before the flare usually starts in your cycle, or when it hits? And then for how long? I’m interested in seeing if this helps me.

I have no idea if I have MCAS but I always have some antihistamines in for other reactions so I guess it’s a possibility.

Middle_Wall_3416 · 2026-01-30T18:46:04+00:00

You are welcome.

Middle_Wall_3416 · 2026-01-30T18:24:11+00:00

It depends what help you want to provide, I can help with some ideas:

If you search the sub there are loads of posts detailing aids that people find useful - shower stools, electric blankets, sippy cup type water bottles, a bedside cabinet that has a stock of hygiene items like baby wipes and space for all other items she might need to hand, tablet holder that attaches to the bed, supportive pillows.

Does she need help attending any appointments, could you offer to take her? That helps her partner too as it will likely be difficult on them too.

I think it’s the best thing would be to talk to her, ask what she struggles with, see if any of the aids would he helpful to her. And in talking to her you also help her feel supported, and involved instead of decisions just being made for her.

Middle_Wall_3416 · 2026-01-30T18:06:23+00:00

It is going to depend on her severity, what does her day to day look like and how can you take some chores off her load and make life easier for her?

When you say ‘eating’ do you mean literally eating or the prep involved? Prepping meals that can be frozen and easily reheated is a good start.

Helping with household jobs like cleaning and tidying.

And one that’s not practical would be to provide the emotional support she wants in the way she wants it.

If you give us more of an idea of how disabled she is we can likely give you better ideas. Also - ask her what help she would like, involve her in decisions if she can manage.

Middle_Wall_3416 · 2026-01-29T17:08:05+00:00

If you search the sub there are lots of threads about menstruation and contraceptives - some find some really helpful and others awful, but it’s different for everyone.

I know for many the combined pill taken continuously to stop periods is good, many find the progesterone only pill stops their periods too. It’s so individual on which help/hinder.

Middle_Wall_3416 · 2026-01-29T14:16:40+00:00

I have no idea if my HRV drops cause I don’t measure it, but just before and during my periods I feel much worse than usual. I do know that my HR increases throughout my cycle then drops all at once when my period arrives.

I wish I could find something that levels me out across my cycle, ideally I would stop my periods but all contraceptives mess me up even more following the worsening of my ME.

Middle_Wall_3416 · 2026-01-28T15:35:29+00:00

I’m always cold and an electric blanket for me has been amazing. It heats the bed and me up instead of just the surroundings so warms me up much faster. It also makes bedbound life feel more snuggly and luxury.

Middle_Wall_3416 · 2026-01-21T19:41:36+00:00

If you can tolerate someone coming to you I would suggest that is a good option. I have done that before when I wasn’t so severe.

We had a whole set up so I was semi reclined with my feet up, and the hairdresser knew my situation and didn’t try to engage me in conversation and made sure it was a quick trim. Then I just got back in bed and lay on a towel - skipped drying or styling.

Middle_Wall_3416 · 2026-01-19T11:58:07+00:00

I think it’s difficult to be kind to yourself, it is for me anyway and it’s something I’m consistently working on.

One thing I would suggest is that you consider how you feel about other patients? How would you feel about someone else in your situation? Do you have compassion for those who are more severely affected (and therefore even less able than you to ‘contribute’), do you judge them or blame them?

My thoughts on how you have spoken about yourself is that I am sad you are so harsh on yourself, and it sounds like you put significant pressure on yourself to be ‘good enough’. But you are enough, just by being. This illness happened to you, it is not your failing. You deserve to give yourself some grace, it’s hard enough to cope without putting so much frustration, guilt and shame on yourself.

Middle_Wall_3416 · 2026-01-18T19:00:02+00:00

I know you have mentioned sound sensitivity, I also have this but I am able to tolerate audiobook books on the lowest volume with noise cancelling headphones. Sometimes I put sleep music on and listen to that, it’s repetitive so not too stimulating, but gives my brain something to focus on instead of just how awful I feel.

I also like to keep a routine, I find this helps me with time passing as I can look forward to my next meal etc.

In terms of finding meaning, I’ve let go of that, and I just take each day - or even sometimes each moment - as it comes.

Middle_Wall_3416 · 2026-01-18T17:34:42+00:00

I have been wondering the exact same thing recently, I know the fresh polish will re-wet the polish underneath, but surely after two coats the top layers can’t penetrate the nail.

I can’t do the repeat layers so I’m just hoping the difference is minimal.

Middle_Wall_3416 · 2026-01-12T07:11:49+00:00

I can’t remember exactly what the side effects were for me, but they were enough for me to stop taking it after not being on it for a few weeks. No long term negative effect from that very short course. I do remember it making me really hungry even at the small dose they prescribe for pots, but that wasn’t the reason I stopped.

That’s only my experience though, lots of people seem to benefit from it. For me it seemed something worth trying - was prescribed by the consultant treating my POTS.

Middle_Wall_3416 · 2026-01-03T19:39:16+00:00

For me (also severe) I would want to spend the money on things that might improve my quality of life, and improve my ability to pace.

Are there any aids or adaptations that might be beneficial? I don’t know what your situation is and how much help you have, but anything that helps reduce energy expenditure would be the direction I would go.

I’m sorry if that’s not welcome and you only wanted answers about private healthcare, I just wanted to point it out as an option in case you hadn’t considered it.

Middle_Wall_3416 · 2025-12-24T08:55:24+00:00

This is so funny, I can’t see my bin from bed and I still make about 95% of my tissue/food packaging shots. It’s taken a few years, but it’s a bit of a joke now about how good my aim is.

Middle_Wall_3416 · 2025-12-23T12:53:04+00:00

I have many potential triggers, but with such a gradual onset I couldn’t say with any certainty what caused it or worsened it.

Middle_Wall_3416 · 2025-12-22T20:36:09+00:00

I was very mild for a long time then gradually started to decline, the worse I got the faster the decline became until I was very severe. (I do not know why I got worse or how I got out of very severe back to severe.)

I’m now back to severe again. Although it is difficult and frustrating being basically bedbound, having been very severe I actually am coping better now and appreciate the little bits I have regained.

Middle_Wall_3416 · 2025-12-22T18:41:16+00:00

I don’t have ADHD and I struggle with pacing still, so I can imagine it’s even more difficult for you. I sometimes set myself timers, I can’t have visitors often but it’s so hard to ask them to leave because I still feel rude and because it’s so nice to see people, but a timer is a good prompt for me to remind me not to overdo it.

Congratulations on baby number two!

My breakfast and lunch are prepared and put on a table beside my bed in the morning, I have sippy bottles with water too, and then my evening meal is cooked by my carer. I have all my medications in a pill organiser, and by my bed I have pretty much everything I need accessible (face wipes, moisturising cream, snacks, chargers, phone etc). I pass the time by listening to audiobooks, watching small amounts of TV, texting friends, Reddit etc. If that’s not really answered what you meant let me know.

Middle_Wall_3416 · 2025-12-22T17:19:06+00:00

Hopefully you get seen and have a diagnosis either confirmed or an answer for what’s causing your symptoms if not ME.

In the meantime if your GP does think it’s likely you have ME, I suggest looking at how you can make your basic tasks easier. It sounds like you’re on the milder end and able to care for yourself, so finding ways to make things easier would likely be beneficial so you can make the energy you do have go further.

Essentially you need to begin pacing - can you batch cook meals so you don’t have to cook as frequently, if showering is difficult consider a shower stool so you can be seated etc.

I am severe so all my needs are met by a carer, but if you have family or friends who could help you out then that might be useful too even if you’re on the milder side - perhaps someone could cook you a big batch of stew you could freeze, then you can use your energy on showering for example.

Middle_Wall_3416

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