Any littles with CFS/ME?

[minahbird]

I have chronic fatigue syndrome/ myalgic encephalopathy, and while it doesn't affect me badly nowadays (since moving, I'm now up to around 80% functionality, and the only reason it's not 90 is because I'm still retraining my body), I feel it's best to be completely open about it, so made sure to put it in my personal. I figured it best so that if anyone did want to potentially be my daddy, they would know from the start.

 

I've been talking to someone who I was hoping might be my daddy because he's so amazing, and we got to talking about disabilities and it turned out he didn't know about mine, and when I told him... it's like everything changed in a heartbeat. I know he's not a bad guy, and he explained his feelings about having a disabled little, which frabkly make sense.

Thing is, I rarely think of myself as disabled if I can help it. My CFS/ME limits me a bit, and now and then I'll have to have a 'bed day' to recharge, and have pain, but other than that, I'm good. I don't want to lose the one guy I've connected with in years because of this stupid illness, but I don't know what to do.

 

Have any of you got CFS/ME at all? If so, does it affect you badly, or are you like me? Does your daddy understand about it? Can you perhaps explain how it affects you?

[tayiie]

I have a friend of mine who has this and is a little with a caregiver. I can ask her and see if she wants to speak her mind about it.

[minahbird]

That would be wonderful, thank you! Do you know if she's severely affected or just minorly so?

[tayiie]

No idea ^.^ but she's writing to me at this moment so we'll see :3 

[minahbird]

Thank yooooou! <3

[tayiie]

Alright this is what she sent me, she was a bit tired when typing. But shes thinking of making an account here so maybe she can post answers to further questions some other day ^.^

 

"Well I recommend that you REALLY, REALLY explain your illness and how it affects you. Cause it kinda sound like he thinks its way worse for him to take care of you when it in fact only changes small things. Me and my daddy are still trying to figure it out. I do not work at all because of me ME. So its fair to say that it affects all my life. Sometimes its hard for him to read me and he might treat me wrong cause he thinks i have much more energy then i actually have, but we've agreed that I'll just say that im too sick and he will let it go. The biggest problem for us is that when i feel down and lies in bed and has nothing to do all day while im lying in pain- i get soooo extremlt needy. And if thats the biggest problem for us, I cant see how this illness would affect your caregiver so much that he would back down. Sounds like he's just scared and really dont know much about this illness. Try to think of what would be the difference between you and a "normal" person and explain HOW u need to be treated. If he knows, I dont think it will be too hard. Also, you said youre 80% healthy, explain that too. You maybe have days when u need to take a break from all of this, but when that day is over you'll be back to normal. // Little with ME/CFS, 22 years"

[minahbird]

You are an absolute angel, thank you!! That's exactly the kind of thing I needed to know. Your friend's totally right. My ME/CFS doesn't affect me nearly as much as people seem to think and though I walk with a crutch/ crutches for long distances, I can manage perfectly fine around the house apart from the very occasional day when I need to use them (occasional as in maybe once or twice a year, if that).

 

Mostly, the help I need is with math (it affected my numeracy skills), some tasks like brushing my hair when I'm extremely exhausted (maybe every 3 or 4 months, unless someone wants to do it more), and being around people (I have social anxiety). Most other things, I cope with by myself. I'm 32, have had ME/CFS since I was 13 and have never had a carer at all. My parents help once in a while, but that's not often, and I'm their carer actually. I even worked in a care home at 18, when I was at the height of my illness.

 

My main concern is that I literally don't like to have my ME/CFS 'looked after'. Being treated as a little is very different to being treated as an ME/CFS sufferer, and while I like the former, I don't like to give in to my illness and let people take care of me unless I absolutely can't handle it. My main wish, when it comes to my illness, is to be able to cuddle someone when I'm hurting and just pretend it doesn't exist. Thankfully, I only have painful days now and then, but when I do, snuggles and a movie are the ultimate 'care'. 

[Ink]

Hi Minahbird, I wanted to provide an outside perspective of this from someone with zero experience with your condition. Perhaps you might find it useful to understand how this appears to a new acquaintance viewing your profile.

 

The person you have described in this post is someone who is most of the time generally unimpaired by her disability. At the times that you are, you are determined to take care of yourself but may require a bit of extra affection to see you through it. This is quite different to the way it sounds in your profile.

 

I understand you said that this particular person didn't read your profile. That's really unfortunate because you went to great lengths to be very open and honest about this. I wonder - did you explain your disability to him in the way you have just done so here, or the way you discuss it in your profile?

 

In your profile you simply say "I'm disabled, but I try to be as active as my disability allows. When I can't be, I'm still trying to be productive, whether that's writing, singing (I adore music), colouring, crafting or just making random things." This sounds very open and truthful but compared to the level of impact you've now discussed, you make it sound a lot more involved. You have left it open to the readers imagination as to what exactly your condition is as well - which is totally your choice - but understand that the human mind will make all sorts of assumptions about this when it isn't narrowed down a bit. These things together may turn people away where a real comprehension of your situation would not.

 

I think its really great that you have intentionally decided to be upfront about all of this in your profile. At the same time, I don't think it would be unfair of you to have something along the lines of "my life has baggage, just like everyone else" (please don't use this example, its terribly corny) and for you to later elaborate on that when the time is right or once you are having one of those days where it does impact you greatly. If it is indeed impacting you only a small amount then is there a need to really treat it like it defines you? Plus if you have a handful of weeks getting to know someone and then have to deal with your condition for a day or two, the other person has a time frame for reference and it shows to them what the level of impact is likely to be.

 

I guess my point is - if you treat it in your profile like a huge deal, someone else will believe it to be a significant factor of your life before having even met you. If you are open about it when it happens, then it gives the impression that you just deal with it when it comes but you don't let your condition define you.

 

It's certainly a tricky one. There will definitely be people who disagree strongly with me, and probably even caregivers who would be angry for not knowing every detail upfront. But I'm not so sure that is there right, given that you don't let it define you

[LittleGirlEmilia]

My partner is struggling with CFS.. It's a freaking horrible illness. It affects all areas of our lives. I'm lucky if I see him for an hour a day... We live together.

I'll tell you my experience with it, but it may turn out to be a rant...

 

(Warning: This person hasn't had any attention for 12 months) 

 

He's treating me like a parent and I'm REALLY not his mom. I shouldn't have to tell him to go to bed before he passes out and then try my hardest for 3 hours to get him to go to bed (because he's passed out somewhere stupid and I can't move him by myself). This is everyday and it is putting a massive strain on me. I'm not made for being a 24/7 carer. I can't cope! 

 

He even slept in to go to the doctors!

 

I know he can't help it. But it's been going on for nearly a year and my life has evolved around him and making sure he's well and looked after. I have so much patience but I can feel it running out. The only way to get him to go to bed is fall out with him and he'll leave the room, it's not healthy. (Falling out with him is a last resort, after about 2 hours of being tortured by his snoring and flailing limbs and all sorts he does)

 

And I'm really freaking lonely. 

 

So that's my experience with it. It's ruining my partners life and it's ruining my life.

 

I'm glad you are 80% okay though it gives me hope for him getting better.

[minahbird]

It can get better hun, promise. If you look up a book called, I think, 150 tips for living with ME, or something like that, it has some tips in it that are so incredibly valuable. Some of them, I never would've imagined helping, but they really do. Like, for example, laying on the bed to dry your hair, resting your elbow on the counter to brush your teeth. Some of them, I think, actually may be what helped me get better. They didn't change my life themselves, but I was able to adapt them to my life and it made things so much easier.

 

I don't know where you live in the UK, as well, but there are some great support groups out there, both for carers and sufferers. There are even some books by the Hummingbird Foundation that give advice, including for carers who need help coping. 

 

I know from my own experience that it's just as hard knowing that you're being a burden on your loved ones as it is to suffer with it yourself. It takes time to come to terms with the illness, and even longer learning to find ways to cope and learn your new limits. Once he does, though, things can get better. I've known several people who recovered, and that's what's given me the strength to keep fighting. Every day is a struggle not to just think 'I'm not going to get better', but he can. I won't say he will, but he can. 

 

One thing I will say is, as much as it hurts, be firm. ME sufferers have a problem with willpower. We can't easily tell ourselves to do things, no matter how much we want to or know we need to. Sometimes, it takes bribery or other methods to get us to 'behave'. Personally, I'll do anything for hugs/ cuddles/ snuggles. If I'm not willing to do something, my mom can always bribe me by promising a hug. 

 

If it's any help, I was at about 50-60% early last year. The UK weather was torturing me. I'm in Canada now and I feel like a new person. I'm able to eat more food than I could before, can actually drink water (any time I tried to over there, I got heartburn), am being treated with different painkillers, I even am starting to teach myself dance! I cook nearly all the meals we eat now, where I couldn't manage more than one or two a week before. I only take maybe one nap a week now. I have days when I wake up feeling half dead (one was just a couple days ago) but they're a lot more rare now, and I luckily don't have pain days much at all, with only two in the past 6 months. Those days are the worst, frankly. I end up curled up in bed, generally in tears, because I hurt so much, and no painkillers, heat pads or ice packs help. I just have to ride it out, and snuggle a teddy or something.

 

I know it may sound counterproductive, but try telling him how you feel, if you haven't already. Chances are, he already knows, but hearing it out loud can help, because it makes it more real rather than potentially just paranoia. It may make him want to try harder to learn ways to cope that don't revolve around you, thereby giving you more ways to have some freedom. 

 

Either way, I hope things get better for you guys, and if there's anything you need some info on from a sufferer that you don't feel comfortable asking your partner, feel free. It's an isolating illness, for sufferers and carers, but there are ways of getting through it.

 

(also, yay for Sailor Moon!!)

[Guest Kali]

As someone who has battled with the symptoms of CFS for two decades, I sympathise with all posters so far. The OP must be congratulated on being open about her condition. It's a hidden illness and one which is dogged by awful stigma of laziness etc. It's impossible for non sufferers to empathise, but there are definitely good people out there who won't let this deter them from being your CG.

 

As a Daddy myself it can be difficult at times, particularly when symptoms flare up. It's one thing for a little to be poorly but equally if not more crushing for a CG as they may be unable to fulfil their role. To the little with the daddy suffering with CFS I would urge patience, if possible. Episodes of CFS often improve, never to return or they can recur when the sufferer overdoes things. My life is affected these days maybe a week or two of the year, and that is nearly always my fault in overdoing things. Otherwise people would never know. So don't lose hope with your Daddy. He just needs to learn to manage it - which took me a couple of years.