Am I Just Being Over-Sensitive?
Posted , 6 users are following.
Hi, my name's Leila.
I'm so sorry to do a long post straight off, but I'm really in need of some advice if possible please.
I've had M.E & Fibro for the last 14 years, since I was 24. I also have severe Agoraphobia.
For about 10-11 years I've also had a serious addiction to a prescription sleeping drug called Zopiclone.
For some reason after a year or so on this drug, the effects reversed to the point that it actually gave me the energy to do "Normal" things. It served as an incredible painkiller & relaxant.
I've now managed to stay clean of this hideous drug for the last 188 days, unfortunately now I have nothing to mask the pain & it & the Agoraphobia's intensified.
It's my birthday next week, and my best friend announced that she's booked a half day at a spa for us both.
I know it's a really nice, kind thing to do - but I said politely that although I appreciate her being kind & I in no way want her to think I'm being ungrateful, there's no way I can do it unless I take the Zopiclone.
She said that she was surprised I couldn't do it because "It's Not Like We're Doing Anything Strenuous, I'm Not Going To Do Laps Of The Pool - Just Laze In It", "I Know You Had A Bad Turn Recently, But You'd Done A Lot - It's Just A Case Of Trying To Pace Yourself" "Well, It'll Relax You & Make You Feel Better!!"
She even said she would give me Zopiclone.
Then when I said I was panicking because she'd shelled out the money for something that I couldn't do, she didn't talk to me for the rest of the day, then messaged to say "It's Fine, I've Managed To Get A Refund, I Didn't Mean To Stress You Out - I'll Have To Go Back To The Drawing Board Now?!"
I feel devastated that I'm now in the position of feeling like an ungrateful, awkward person, when all she was doing was something good for me... I can't help but feel like she's implied that I somehow have control over my body & that I'm just CHOOSING to not do this.
She's my closest friend & I really thought she understood how serious my conditions are, but now I feel like she doesn't get it at all. She didn't even ask if I'd be up to it, booked it even though she knows that I can't even set foot in my own garden, knows I'm in really bad shape physically...
By saying "It's Just A Case Of Trying To Pace Yourself" & "I'm Surprised, Because It's Not Like We're Doing Anything Strenuous" I feel like she's discounting my 14 year struggle, that all my explanations over the years of how my body feels have been pointless, that she thinks somehow I have control over my illnesses. :'(
What I'd like to know is, am I just being over - sensitive??? (I'm a straight up person & I don't take offence easily, all honesty is appreciated.)
Thanks for having the patience to read this & I'd welcome all/any opinion.
Lei xxx
0 likes, 9 replies
jackie00198 Ping78
Posted
Hi, Lei:
Boy, I can sure relate to your post. I had a similar experience with my best friend of over 50 years. I've had ME/CFS for over 15 years, and 2 years ago i had a terrible setback. I told her about this and explained that I was housebound. In subsequent emails, she asked me if I'd taken a trip to see my mother during Thanksgiving. I don't know what part of housebound she didn't understand. Or maybe she thought I'd gotten better. Anyway, it was very hurtful. Also, I'm too ill to talk on the phone. The way I communicate is by email. Yet she often ignores my emails. I have to admit, I sometimes get hurt and angry at all my friends who have basically deserted me in this way. In my better moments, I tell myself that they're just doing the best they can, and that it's very hard to understand ME/CFS for those who haven't experienced it. So this is a very long way of saying, "no, I don't think you're being over-sensitive." By the way, I'm curious as to why you discontinued Zopiclone. You mention it gave you energy, was a relaxant, and a painkiller.
Ping78 jackie00198
Posted
Thank you so much for your reply.
I'm sorry that you've had same/similar experience... It hurts so much. I feel like I can never trust my friend again properly, I am really angry because I feel as though it was more about her feelings than mine... When she's said "Will you be upset if I don't come over today, because I need to rest" I say "Of course not, you need to rest" - not, "Well I'll make you feel better, just stay for a little while" ...
What I really wanted to say was: "Why would you just book something without asking me, knowing how unwell I am, knowing that my Agoraphobia is so severe that I can't even sit in my own garden, tell me it would be a shame to get back on Zops when I've done so well the last 6 months but then offer me Zops, why are you not saying "It's ok, I understand that just because it's relaxing for me - it doesn't make it so for you... You only have to tell me once that you cannot do something for me to believe you"
But I can't because I guess she would take it as an attack... It's an awful feeling. And I'm the one apologising.
The only reason I stopped taking the Zopiclone was because the place I was buying them from suddenly stopped responding to my contact for the first time & didn't send the order I'd paid for... I know it's a huge risk buying meds from the internet, but I'd used the same place for years & the stuff worked for me. As soon as I'd confessed to my GP that I was using the Zops to function, she cut me off, despite knowing that it's really dangerous to just stop, and that the withdrawals from it can last YEARS. I have recently recieved an email from the company stating that they've had problems & that as soon as they're sorted they will send the 300 tablets that I paid for back in February... I'm scared to become addicted again, but also want to be able to function again. I don't know if the company will fulfil their promise, it's a waiting game now. Nothing I've ever tried has affected me the way Zopiclone does, it literally stops me being sick within 5-10 minutes, sometimes less - it felt like a miracle to me.
I did abuse it though, some rare days I'd take up to 30 , usually an average of 4-7. And I did develop a binge drinking habit, which was really dangerous because it inhibited my respiratory system.
bronwyn97278 Ping78
Posted
Morning Ping; yes I think we all have a similar story to you, too: (I seem to have lost many friends, and missed many exciting, normal events that others take for granted, too).
?I also am wondering, like the other person's response/question, why have/what made you stop taking your Zopiclone, if you felt it helped you so much? I will go in and research this drug to find more info on it, but you say it was "a hideous drug", but to me, as others do too, when with this/these conditions, if something works for us, we use it.......will be watching for your reply.
?As to your question of "are you being over-sensitive": I guess we all do feel oversensitive re the reactions we get from our friends (I have an example only too recently.....a good friend that I have had for over 30+ years, and to whom I/we have always exchanged gifts for our birthdays etc.....seems to have "been very distant over her birthday this year, and making me ask Why/what have I done?"......but cannot find an answer...and feel the need to ask her directly, too..............so no, you are not alone in this either......IT HURTS hey?.............Bron
Ping78 bronwyn97278
Posted
Thanks for your reply Bron.
The only reason I gave up the Zopiclone is because the company I've been buying them from for many years seemed to disappear, the website was/is still there, but the order I'd paid for didn't arrive & I got no response to my many emails...
I know it's really risky buying from the internet, but I'd used the same place for about 6-7 years with no problems - and the meds worked for me.
My GP just cut me off when I confessed that I was using them in the daytime, so I had no choice but to seek them out elsewhere.
They made so much difference to my life, I did abuse them & mixing them with a drink problem was stupid & dangerous - hands up to that... But they made it possible for me to function & the painkilling effect was unbelievable... I've never found anyone else who has the same effect, my GP did say it's probably down to the muscle relaxant in them. She said she'd actually suspected I'd been doing speed!! I've even been accused of lying for attention (By people on a Zopiclone addiction forum!) because they said I couldn't possibly take them and function... The last 6 months without them have been torture, the pain from my conditions along with the severe withdrawals are immense.
Thank you for the ressurance that I'm not alone, I just don't understand why someone who's truly a friend would discount my/your feelings as though it's a choice, or an easily solveable issue, and yup, it feels horrible.
bronwyn97278 Ping78
Posted
Me again Ping; I think I can say why "you can't get this medication anymore".....I have been into the site re this, and it seems it has been banned from production because of the side effects. One serious problem that I found was the effect it had/has on the liver and kidneys....Especially if taken with alcohol and also if taken over a long period of time. So perhaps is best not to try taking same again.
?As to similar meds that may help you are other medications such as Gabapentin, Amitriptylline (both are good for the type of pain that we experience). Other natural medications for me are taking Magnesium, and increased Melatonin (either through Cherries/Cherry Juice)..I take one 5mgm tab at night to give me a better sleep and the feeling of waking with a Clear Head. As to the need for a muscle relaxant, if needed, I take 5mgms of Valium on the times needed (when my muscles feel tense).....also the use of Physiotherapy and Remedial massage are also very beneficial.
?Perhaps if your GP can discuss (or you discuss with her) these treatments, you may find yourself getting back on track (and getting rid of the Eternal Pain that we have).......will be thinking of you and waiting to see how you get on................
Bron
Ping78 bronwyn97278
Posted
Thanks Bron.
Yes, I know it's not a good drug to be on long term & I had read that it's been recognised as such.
However, my friend is still prescribed it, and her boyfriend also takes it. He's a pharmacist.
I am prescribed Amitriptyline, and take 125mgs every night-it does help me sleep but not with the pain. I have experimented with it in the daytime, but it has no effect on the pain, or my mobility.
My GP refuses to prescribe Valium or anything else but the Amitriptyline & paracetamol. I take Magnesium & Calcium 3 times a day, but I haven't tried Cherry Juice, so thank you for that - I'll give it a go.
I should've said that I did find another company the other day, and made an order because I was so desperate to find a way not to let my friend down with the spa day, and because I'm desperate to be able to function again. But apart from not knowing if they'll arrive, they are really expensive - £47 for 28 3.75 tablets!!! It's a bad situation all round.
Thank you for your input ladies, I appreciate it very very much & I wish you goodness & happiness.
Lei xxx
paul75665 Ping78
Posted
Hi Lei
I can totally relate to your feelings, and I'm still trying to make close friends and relatives understand the impacts of my CFS/ME. I was only diagnosed a couple of months ago, yet have been suffering this illness for 2 years now, and I'm still struggling to come to terms and adjust to this new life of mine.
For one, there's my partner, who has been a star since I've been diagnosed with this and does all she can to make my life as easy as possible. However, every now and again she mentions doing something, whether it be a trip to the shops, a day on the beach or see a relative, and when she comes up with the ideas I find it hard to throw the spanner in the works. I feel so guilty and useless that I can't just drop everything and do the things she would like to do. She does understand and always apologises for making these suggestions, but I can't help but think I am always letting her down. Then there's my brother and his upcoming christening of his newly born son, my new nephew. He invited us to the christening, however it is quite a distance to travel, it will be quite a long day, and I'm still trying to get some of my symptoms under control as they are so random. I explained to him that of course I would love to go to my nephews christening, and would do all I can to make it happen, but I can't make any promises and there's a good chance I probably won't to be able to make it. I haven't heard anything from him since, and now the pressure and stress of wondering what he thinks and trying to make myself well enough is having an adverse effect and actually highlighting and making my symptoms worse. I don't think it will cause a family fued, even though he can be quite hotheaded and opinionated, but I know he will be quite upset if i couldn't go.
Unfortunately Lei, I don't have any advice for you, I wish I did, I'm sort of looking for advice myself I guess, but you are definitely not alone with your problems. Its fair to say my life has turned upside down since having CFS/ME, and I'm hoping that one day I will get to the point where I don't feel like I'm a constant let down to all the people I care about. There's always hope I guess, even if thats wearing thin at the moment.
Take care and all the best for the future
TheKernel Ping78
Posted
Hi Lei-
Firstly, many thaks for your honesty. Even relatively anonymously, it is not easy to recount such diffficult experiences (I know I strugggle); I joined this forum some time ago and I have yet to match this kind of disclosure.
Secondly, I would say it's no-one else's business to decide whether or not you are being "Over- Sensitive". You are unique, and your circumstances are unique, so only you can make that judgement. For what it's worth though, I can relate to much of what you've said. There is a wide cultural misrepresentation of what ME/CFS and the attendant symptoms are like to experience. Whilst it's obviously true that no-one can definitely know what it's like for another indivdual to experience illness, it's certainly the case that since epithets like "Yuppie Flu" were attached to the condition in the 1980's , the syndrome has been largely dismissed. If you were to tell someone you were suffering from Parkinsons or Multiple Sclerosis, this disparaging baggage wouldn't be attached, and you would elicit a great deal of sympathy. I myself have suffered from ME for at least 10 years (probably longer), although I only actually achieved a clinical diagnsis of such about 18 months ago. It's sadly been my experience that many (not all) of my family and friends have assumed that it's basically analagous to a head cold and/or is a entirely psychological affliction. I sometimes think this is my fault, as I'm not by nature a grumbler and have probably (to my personal detriment) tried to push on through when I should've rested, and I'm sure at times this has exacerbated my symptoms very significantly.
It sounds to me like your friend has no real conception of the seriousness of your condition, and furthermore I would have to say that if she's offering to procure drugs for you which she knows you've struggled with in the past, she is focussed not on your wellbeing but on the pursuit of her own agenda. Sorry if that sounds overtly personal, and obviously I'm not familiar with all of the factors invovled, but I'm saying it as I see it. You need to remain mindful (easier said than done) of the reality of your predicament as you experience it; you cannot make other people understand that, and you have to do what's right for you. If you presently don't feel able to participate to this extent, that is your prerogative.
It sounds like you've done absolutely the right thing in withdrawing from Zopiclone, and I hope this continues. Personally I have tried a vast array of prescription mediicines and never found any of them terribly useful. One drug I did find helpful in terms of numbing the pain of muscle spasms was Baclofen. I'm not sure if this is something you've tried but it may be worth discussing it with you GP.
[b]https://www.drugs.com/baclofen[b].html
Anyway, for now I hope you start to feel better soon and can stop carrying responsibility for other peoples false ideas of the condition(s) that afflict you. It took me a while but once I came to realise that I wasn't accountable for the way others viewed my condition it was actually quite liberating.
BW
Beverley_01 Ping78
Posted
Hi There Lei,
I appreciate your concern around this issue but feel I must state to you when you have this condition you are over sensitive to a lot of things. I'm not talking about only emotionally here. I'm sure you appreciate that. We are more sensitized to pain, noise, light, taste, the whole Kaboodle ! I call it HIghly Sensitive which has less of a negative connontation.
People, don't understand CFS/ME. Your friend doesn't, my friends don't but, below that, there is also a deep need for people to try to make us ok. Your friend wants you to be ok. She booked something gentle that they believed would be ok and would make you feel ok. She's forgotten, for a brief period of time that you can't do certain things, her need to make you ok superceeded that. I can totally understand how hurtful that is for you to be told, surely you can pace yourself. It totally discounts your sense of this awful condition. However, what I read into this is your friend is also hurt but not able to say it. It seems to me that she misses being able to do things like this with you and so reacted , quite dismissively, that somehow you could just do it. I think you did fantastic to tell her you weren't able to do this. I think that you're also doing fantastic to stay off this drug that has side affects that could cause you to be worse further down the line.
Also, It is labourious, exhausting and time consuming to keep repeating ourselves to those we care about and believe care about us. Unfortunately, there isn't a quick fix to that as people without this condition often need reminding how hard it is for us. Also, If you are like me and your symptoms fluctuate, then it can be even harder for people to understasnd as one day maybe I am up to going out, others I'm bed bound.
Be good to you Lei and remember that you have been really assertive in pointing out that this is not something you can manage right now. When you have the energy explain to your friend that you appreciate they wanted to do something nice for you but that it's difficult and frustrating for you too not to be able to summon the energy like you'd like to for things like this. I'm sure there's lots of other things you'd like to do too that this condition stops you doing.
I hope you manage to do something nice for your birthday in any event.
Best wishes
Beverley