Category Archives: Things I Have Lost
I can’t even describe my loneliness
…Mommy is stuck in bed: she can’t move (and Mommy, don’t feel guilty – you are entitled to rest and get better)…Thais is now in India (and Thais, no feeling bad – you keep having fun and sending back photos…the boy that I may have been interested in (and who I had hoped may help me escape this total solitude) is out-of-bounds…and I can’t confide in my cousin/friend (who ‘called’ the boy out of bounds) because I am still angry that she has imprisoned me in my isolation (whether the boy and I worked out or not)…
The last few days I have stayed in the same pyjamas, not leaving the house – swimming in my seclusion. Is there a record for how long some-one can stay in one pair of pyjamas non-stop?
I’m looking forward to the hospital because I’m hoping the higher dose of ketamine will let me sleep for the whole week – that’s a week less loneliness! (And I’ve organised extra posts for this blog, just in case I am unable to string two words together.)
I’m realising that I have nothing to do – no work, no friends, no life – and I’m hitting the ‘now what?’ time. I can’t be bothered with anything – it’s just sad. Despondency is the only word I can think of.
I tried to distract myself by starting a new website – it’ll be called fibromodem.com – and putting everything in the one place. All I got was brain frazzled (and couldn’t do anything for 2 days – good thing that I save some extra research posts for such occasions)! The website will be up soon…it just seems that I need a little more time than I originally thought. I HATE that I can’t have what I want immediately (especially when I’m using it to hide from myself!)
I have no idea how to fix this problem. I have no idea how to meet any new people. I have no idea why all my old friends are gone.
I know that all of you (whether you’re married, attached or single) understand this without me having to find the right words, and I realise that many of you look to me for some answers; but this time, I have no solutions.
The two items I mentioned were only a sample of your rhetoric. There are many other items that you mentioned that also need apologies. In saying that you only want to discuss the letter with me, shows me your lack of respect you have for Yvonne, as its your attitude towards us that has caused most of your problems. The way we relate to each other has a lot to do with your attitude towards us, and I will only discuss the letter if Yvonne is present, as I have shown her all the recent e-mails.
Yvonne & Dad.
PS: We both don’t quite understand one of your statement in your last paragraph namely, what does “choosing me” mean ??
And that’s it…it’s over. All my compromising is done. No more responses…ZIP!
And now for the good news…
Federal Health Minister Tanya Plibersek announced today that the government would subsidise pregabalin (Lyrica) through the Pharmaceutical Benefits Scheme (PBS).
“This listing will be a great relief to hundreds of thousands of Australians who suffer from chronic nerve pain,” Ms Plibersek said. ”It can be so debilitating that it affects people’s capacity to work and go about their daily lives.”
Pregabalin is the first PBS listing specifically for the condition, which has a variety of causes and symptoms.
I woke up and got out of bed as late as possible today. I hung around the house, resting.
Tonight was the premiere performance of A Funny Thing Happened on the Way to the Forum, starring Geoffrey Rush (yes, one of the few people who have won the “Triple Crown of Acting”: an Academy Award, a Tony Award and an Emmy Award. He has won one Academy Award for acting (from four nominations), three British Academy Film Awards (from five nominations), two Golden Globe Awards and four Screen Actors Guild Awards. He is the foundation President of the Australian Academy of Cinema and Television Arts, and the 2012 Australian of the Year).
And I had tickets. I also had tickets to the After Show Party, to rub shoulders with the rich and famous – the theme this time was ‘Dress for Roman Fun.’ I was going to be rested, relaxed and ready to go out!
I had my Romanesque-style maxi-dress ready. I had my bronze jewellery set out on my dresser and a laurel of ivy next to it; and I was even looking forward to putting on some make-up!
I also had some of the worst pain that I have had in quite a while: walking was excruciating (that broken bone feeling again!); I had to sit on my arms to stop the shooting pains, then move them to get the blood flowing again, then…; the throbbing above my eyes (is there such a thing as eyebrow bones? You know, not at your temples or forehead, but right above your eyes?) was making it hard to keep my eyes open, although closing my eyes made it feel like I was stretching my eyelid muscles too much; and, to make matters worse, I have a huge, blind pimple on the back of my head (I think it’s from sleeping with the electric blanket on and sweating during the night) that is throbbing like my heart beat.
Needless to say, I didn’t go. Instead, I sat on my couch watching ‘What a Girl Wants’ with Colin Firth, followed by ‘The First Daughter’ with Katie Holmes – FABULOUS! (that would be sarcasm)
If you have FM, you may also be having problems with your sex life or relationships (if you have one!). You could be experiencing loss of libido or having difficulty with sexual performance. It’s also possible your libido is healthy, but the pain and stiffness of FM stops you from enjoying sex the way you used to.
It’s not unusual for people with any chronic illness to complain about having problems with their sex life. But a healthy sex life is important for many reasons:
- Not only does sex strengthen an intimate relationship, but sexual intercourse boosts endorphins. Those are the body’s natural opioids that help decrease pain and increase well-being.
- From my point of view (and many single FM sufferers), you are very lucky to have one – so you need to keep it up!
Talking openly with your doctor and following a few practical tips can help you resolve problems associated with FM, pain, and sex. Then you can begin to enjoy this aspect of your life again.
What Causes Loss of Libido With FM?
Some of the medications, such as Paxil and Zoloft, used in our treatment may cause reduced sex drive. If you take an antidepressant and have problems with libido, talk to your doctor. A simple change of medication or a reduction in dose may improve your sex drive and allow you to enjoy your relationships more.
Further, for some of us, having to deal with the uncomfortable symptoms of FM, including the ongoing pain, fatigue, anxiety, and stiffness, is difficult enough without thinking of being physically active with sexual activity. Learning to self-manage these symptoms with medications, exercise, and lifestyle habits may help to boost your sex life.
How Can I Have Sex if I Hurt all Over?
Some FM patients give up romantic aspirations for fear of further injury and pain. Yet being intimate with your partner is still possible. With FM pain and tender points, you need to work with your partner to find the most comfortable position during sexual intercourse. For instance, if you have FM with low back pain, you may find that having your partner on top or lying on his or her side is most comfortable for you. Or, if you’re a woman who has FM and hip pain, you might use a pillow between your knees to stabilize your body during sexual intercourse.
(FYI: In the next issue of LIVING WELL with FIBROMYALGIA, there will be a ‘sealed’ Valentines’ Day section, showing specific positions (don’t worry, they are NOT photos of me!) that may help with different pains)
Just because you have always had sex in a particular way does not mean that’s the only way. You need to be patient, take it slowly, and find the best sexual positions that allow you to be intimate without causing further pain. Keep in mind, there is no right or wrong way to be intimate with your partner. It may be time to bring out that 1970s copy of the Karma Sutra that you have hidden at the back of your bookcase or night table – find the positions that work for you.
Can Soaking in a Warm Bath Before Sex Help?
Moist heat, including soaking in a warm bath, can help ease FM pain and may allow you to enjoy sexual intercourse – or any exercise – without added pain. Heat increases blood flow to the site and decreases stiffness.
When using moist heat, make sure it is not too warm or you can burn your skin. You might soak in a warm bath for at least 15 minutes before sexual intercourse or other physical activity to get the full benefit. You may also soak in a warm bath after sexual intercourse or other physical activity. Other popular types of moist heat include a warm shower (sit on a chair, if needed), warm whirlpool or hot tub, heated swimming pool, and a moist heating pad.
Is Stress Linked to Sexual Problems and FM?
Stress may trigger FM symptoms. Yet managing stress may help control your symptoms and balance your daily life, which can boost your libido. Stress management may include a combination of exercises, relaxation techniques (deep breathing or meditation exercises), a good sleep routine, and proper nutrition.
Exercise (including sex) releases endorphins, which are the body’s natural stress-fighting hormones, so any type of physical exercise is a good stress-control measure. Relaxation therapies such as deep abdominal breathing, visualisation or guided imagery, and meditation are also helpful in managing stress.
What Else May Help my Sex Life With FM?
If you have FM, talk to your doctor and see if medications can boost libido and/or sexual performance. Improving your overall health by treating any other medical problems may also help.
- What Could Be Hurting Your Sex Life (everydayhealth.com)
- Libido Supplements and Vitamins for Sex – Do They Work? (everydayhealth.com)
Feeling quite hopeless right now.
Crisis occurs when our theories about ourselves in relation to the outside world go fundamentally wrong.
Carol Osborne, The Art of Resilience: 100 Paths to Wisdom and Strength in an Uncertain World
I’ve just spent about 6 hours sending out personalised emails, looking for some advertisers for LIVING WELL with FIBROMYALGIA; after spending a couple of hours doing the same yesterday. I haven’t heard anything back yet – you all know me now: I need everything to happen NOW!
So I’ve decided to stop, not least because my head and shoulders REALLY hurt, but, when I stop I feel hopeless and helpless. I don’t like just stopping. It means I am just waiting. I don’t like waiting, especially when I don’t know what I’m waiting for. I don’t have anything planned for tomorrow…or the next day…or the day after that. In fact, I don’t have anything planned until next Tuesday.
It’s not like I don’t have things I need to do (empty dishwasher, laundry, put the shopping away, clean my bathroom), it’s just that I can’t get motivated to do those things. and tomorrow is supposed to be a beautiful day – and I want to do something, but not really. I am lacking in motivation. What do you do to maintain motivation?
I even submitted ‘maintaining motivation,’ ‘disability,’ and ‘illness.’ Mostly, this search led to sites dealing with depression; although I did find some helpful tips for increasing motivation:
- Test out the assumption that you can’t do something. Break it into small parts and try a piece of it. Self-efficacy, the belief that you can have impact on or change your world, leads to greater accomplishment than a negative “can’t” attitude, which stops you before you have begun. Many “can’ts” are actually “won’t try’s.”
- Focus on what can be gained from effort rather than on total victory. Not everyone succeeds one hundred percent of the time, and valuable lessons can be learned even if the objective is not totally achieved. Human nature seems to dictate that as a project’s chances for success appear to decrease, effort also decreases. Often this decision is based on extreme thinking: if you are not going to be totally successful, why try? Looking at the world as all black or all white will prevent a lot of positive growth by promoting fear of failure and restricting those activities you will be willing to engage in. History is replete with famous “failures.” Columbus failed to discover a new route to India; Edison failed hundreds of times before creating a filament for the light bulb. It is almost impossible to think of anyone who has succeeded quickly or totally at what he or she set out to do. Life is not a winner-take-all contest. Motivation can be increased by focusing on growth and effort instead of winners and losers.
- Shorten feedback loops. When you feel unmotivated, tackle a few projects that can bring pleasure and satisfaction quickly, such as writing a letter, exercising, or helping someone else with a small project. This establishes a connection between action and positive results, thereby increasing motivation.
- Remember that variety is the spice of life and a boon to motivation. Sometimes shuttling between projects that require different skills provides a needed break. For example, employees whose jobs allow greater diversity report higher job satisfaction and are more productive than are workers whose jobs are more monotonous. Organize your time to provide diversity when possible.
- Keep a “have done” list. It is common for us to say, “I haven’t done anything all day.” This type of extreme thinking can be corrected by making a brief list of things to do and using it to organize time and reinforce what is accomplished. At the end of the day it becomes a “have done” list and helps provide solid, positive feedback. Collecting this evidence over a period of a week is even more convincing. If you tend to get carried away with lists, start with only five things to do and don’t add anything else until you have finished one of them. The number of items remains constant at five, thus offering variety and a chance for you to set priorities without becoming overwhelmed.
- Avoid the workaholic syndrome. Some people who worry about flagging motivation are actually workaholics. Sooner or later, their bodies cry out for a rest, and pushing even harder only makes matters worse. All of us need vacations from working from time to time. The workaholic is annoyed by these interruptions or becomes anxious that he will never have the energy to return to the work. What could be a recreational respite turns into a downward spiral of negative and self-condemning thoughts. Try taking a few days out for a real rest. Resolve to use one hundred percent of the time enjoying the feelings of relaxation. Like a good night’s rest, a vacation can restore your ability to concentrate and increase your energy.
- Use positive mental imagery to increase motivation. This is done by creating a mental picture of what you would feel like if you accomplished your goal. The power of imagery seems to increase as the mental image is elaborated upon and anticipated.
- Make a balance sheet for the task you’re procrastinating. Listing the advantages and disadvantages of inaction can help clarify the reasons you may be avoiding something and offer a more positive perspective. Putting the ideas on paper often makes it more feasible to contend with them rationally, too.
So contact with my Father has remained inconsistent since my last post starring him. Not because of the post – because, as I wrote at the time, he doesn’t bother to read my blog – just because of our inexplicable relationship. The only thing that has remained consistent in each of his phone calls (there’s been 3!) is that we have an argument.
I have always tried not to argue with my parents – they are my parents and deserve respect – but this is getting crazy. Mostly, instead of arguing, I say ‘okay’, hang up and burst into tears. Then, of course, I have a flare.
My Father is currently in rehab (funnily enough, the same place that I go). He was transferred there after a back operation. I had to call the hospital to find out that he had been transferred!
Our last phone call was Monday night (the eve of the Day of Atonement, in the Jewish religion), when he called me to tell me off for something else (you’ll hear about it in a minute). Yes, I said ‘okay’. Yes, I hung up on him. Yes, I burst into uncontrollable tears. I just want to have a normal father/daughter relationship with him (is there such a thing?)
On Friday morning, he phoned me while I was asleep and left a message. I don’t want to return the call just to have another argument and another flare, so I wrote him a letter. I realised that this letter might end our relationship totally but I cannot handle it the way it is now.
This letter took me a couple of hours to compose and write (and cry about) – I wanted him to REALLY understand (WARNING: This is a very long letter):
You called this morning, when I was asleep, and I can’t decide whether I should call you back: every time we have a conversation, we have an argument. And every argument we have causes my fibro to flare (that is: every part of my body starts to hurt and this can last two to three days). I don’t know if it is worth it, as you don’t seem to think that I am worth it.
I do NOT try to upset you or Yvonne – I ALWAYS try to do the right thing (I was trained that way by my Zajda!) So, while I have your attention, I’ll let you know how I see our (yours, Yvonne’s and mine) relationship:
Everything I say is wrong – either Yvonne gets upset by it, there and then; or you phone me later to admonish me.
You tell me that a lot of it is because I talk about Mum and that part of my family – but they are my life. I don’t go out very much and, if I do, it tends to be with Mum (she is the ONLY person who can be bothered to come get me and take me anywhere).
I am sick. I have been this sick for a whole year, yet I think that you have only visited me (maybe) four times. (One of those times was because you needed extra meds and another was because I begged you to pick up some food for me). You do not support any of my fibromyalgia awareness activities; in fact, you probably can’t even describe my condition. I have tried to get you to look at my blog so you can understand but you show absolutely no interest. I know that you are going through rehab now (and I hope it is helping and you are doing better) but I have been attending rehab for 3 months. The pain you are having now is the pain I have each time my body flares.
I have only one friend (Thais) who bothers to stay in contact with me.
So, yes, if you want me to talk about anything in my life, it is likely to include my mother and her side of the family.
Then, I decide, for the sake of peace, I will just be quiet. I will attend any family dinners but I will shut up.
That doesn’t help, either. You phone me to tell me that I do not talk to Yvonne, the boys or her mother (I have nothing to say!); that I must include them all in my life and conversations.
So, I try to talk to Yvonne when I call you at home and she cuts me off EVERY time with ‘I suppose you want to talk to your father’.
Well, of course I do – what am I supposed to do then?
The other day, when I left the hospital and as I was getting in the car, I thought to myself ‘Shall I call Yvonne and tell her that I’ve seen you and that you are sleeping’ so she didn’t need to rush over.
No, I won’t, and I started the car and drove away. Then I thought that, if I had seen Uncle Jack in hospital (recently), I would call Mum in that same situation, as knowing she didn’t need to rush to see him would most likely make her life easier. So I stopped my car by the side of the road and called Yvonne. The conversation went something like this:S: Hi Yvonne, it’s Simone. How are you? Y: Are you there now? S: I just left. Dad is sleeping at the moment. Y: Well, I’m rushing around. What did you want? S: I just wanted to let you know that Dad was asleep so you didn’t need to rush there. Y: Your father and I are communicating just fine, thank you. Is that all? S: I also wanted to let you know about Danny’s on the corner. Y: I know it. I don’t think your father is up to walking to a restaurant. S: I just meant that maybe one time you could pick up a nice lunch to have together… Y: Look, Simone. Everything is fine. We are all organised. You don’t need to worry. Was there anything else? S: No, I guess I’ll see you another time.
Now, I remember that conversation very well because I was really upset afterwards. I did NOT tell Yvonne NOT to visit at the hospital, yet you phoned me to tell me that Yvonne can come and go as she pleases. I KNOW that! I just wanted to let her know that she didn’t need to rush around, to take some pressure off – which, obviously, didn’t work.
After your phone call to me, where I just said okay and hung up, I fell apart. I can’t even describe the type of tears that were pouring out of me (and I am still very upset just writing about it).
I feel helpless and hopeless, as I can do no right.
I get it, Dad. You and Yvonne are a couple – I KNOW that. I have no problem with that – UNTIL it affects our (yours and mine) relationship.
I feel like you are not allowed to spend any time with me – I am your daughter. Yes, I am over 18 or 21 or whatever…but I will always be your daughter. You seem to forget that, or maybe, take it for granted.
I understand that Yvonne has a problem with talking about anything to do with your previous life – but, hey! you’ve been together for 20 years; perhaps it’s time for her to get over some of her insecurities? Especially as it feels like I am part of the life she wants you NOT to be a part of, anymore.
I understand that you have to compromise because you live with Yvonne. But, sometimes Dad, you need to choose me – I am NOT always in the wrong!
Perhaps you’re scared, at the moment? You’ve just had an operation. You can’t work. You can’t do very much for yourself. You don’t have a home of your own. You MUST get along with Yvonne – is that any way to live? And alienating all your own (not just Yvonne’s) friends and family is not leaving any doors open. Anyway, that’s just my psycho-babble – I could have it very wrong; but I’m looking for excuses for you and your behaviour towards me.
I CANNOT deal with stress – for some unknown reason, my body has rebelled against me and won’t let me lead a normal life; so yes, I know that stress is part of life, but I can’t handle it and need to avoid it.
So, I still don’t know if I want to return your phone call. What do you think?
I love you
His response came in the way of a text:
1stly before delivering a letter u should consider the ramifications. And then have the guts to deliver it in person. Any time u want 2 discuss all the points ring me. Until then look in the mirror.
I guess he really didn’t get it, did he?
- Day of Atonement (arnoldzwicky.wordpress.com)
Yesterday, after reading some posts on other Facebook sites, I thought about how positive we all have to be – ALL of the time! But, sometimes we need to let it all out, right?
So, instead of all the ‘I’m grateful for…’ or ‘I’m looking forward to…’ type discussions, I decided to encourage a GRIPE SESSION about Fibro! And WOW! What a response – it appears that we (as a group) really NEED to vent every now and then…and there is nowhere to do it.
Each post was to begin with ‘I hate’. The first one is mine. The remainder are the unedited comments from the post. Feel free to add yours in the comments area.
I HATE that I had to phone my Mommy at 10pm last night, for help, because I was in so much pain that I couldn’t lift my head, let alone get myself into bed! I HATE that I have a giant pile of clean laundry sitting in my bedroom that I haven’t got the energy to put away properly! I HATE that there is stuff all over my house because I need to say that I’ll put it away later! I HATE that I was unable to go more than 2 days without codeine!
I totally hate that I get about a chore and a half done and I feel like I could sleep for a week. I hate that I have to take naps throughout the day. I hate the my guy doesn’t understand what I go through and looks at me as lazy. I hate that I don’t have the ambition I used to and that the depression makes me wonder why I even try to fight each day. I hate that almost nobody I know understands my medical issues and looks at me like I’m worthless and less of a person.
I hate that I can’t play the sports that I used to love playing!
i hate that everyone thinks they “know” how i feel! really, you dont! i hate that im constantly ruining plans with my kids and friends. and lastly i hate how im not the person i want to be or used to be
I HATE always having to say I hurt and having people look at me like I grew 2 extra heads. I HATE not being able to go hiking, bike rides, a walk on the beach or even cleaning my house like I used to!
I HATE that I have to LIVE taking a handful of pills to feel somewhat normal! I HATE that I can’t just get up & enjoy the day, playing, going out around town with my kids! I HATE not being able to do any physical exercises to help strengthen me! I HATE not being able to clean my house daily, fold & put away clothes!! I HATE that I can never sleep without taking tranquilizers!!! I HATE FIBRO!!!!!
I hate that people think I’m fat and lazy. I hate that others just look at me and automatically assume i can do anything they ask me to do and if i have to say no, they get upset. I hate that i feel i sleep most of my life away. I hate that i can’t clean my house by myself. Ugh!
I HATE FIBROMYALGIA AND ALL IT HAS CHANGED ABOUT ME! PERIOD…
I hate that some people think I’m stupid because the fibro fog makes me stumble over my words. (I’m not stupid…I’m a PhD student!) I also hate that I can’t enjoy day-long activities that involve plenty of walking (like going to a Renaissance fair or state fair) without getting completely exhausted. And I hate having allodynia, especially when my husband is trying to be affectionate.
I hate that my muscles have been in spasm since Tuesday. I hate that I had to take Roxicet and a muscle relaxer, which made me sleep instead of live. I hate that I have a bunch of clean laundry that I can’t even fold, much less put away. I hate when I’m so tired I just want to sleep for a week. I hate that, although I’m excited about my upcoming vacation, I’m scared that I will be too sick to enjoy it or do the things we have planned and paid for. I hate that I have this stupid fucking disease!
Theres a List, but I cant say………… what I really want to!
I hate’ that I have to take breaks everytime I do things!!!. My energy is never high!!. Thanks Fibro
I HATE THAT I HAVE NOT BEEN ABLE IN 10 YRS DO CLEAN MY HOME OR WLAK MY DOG OR WALK FOR ME!!!!!
It is a new day everyday . The sin gets worse with age!
I HATE Being in pain and crying myself to sleep. I HATE that my ankles swell up so bad. I HATE the days that my feet hurt to touch the ground and my hands hurt to hold my phone and it hurts to talk. I HATE that I don’t want to go out anymore because once the pain hits I just want to go home. I HATE that no matter how many hours of sleep I get I am still tired. I HATE that people don’t understand what I go thru. I HATE that My meds don’t help me. I HATE that I always sound like I am complaining when I say I am in pain.
I hate that I had to have a neighbor come over today and clean my house so that the chimney and furnace guys could get to what they need to get to tomorrow. I hate feeling useless. I hate the fact that even with all the pills I take I still don’t feel able to do the things I need and want to do.
I think I just agree w all of the above I HATE this illness!!!
I hate that I can’t work anymore! I hate the way people look at me thinking I’m overweight and lazy! I hate that I can’t go out with friends! I hate that my memory keeps going! I hate I can’t remember what else I hate!
I hate that I can’t work. I hate being broke. And broken. I hate not being able to be active with my daughter. I hate that I lost everything from getting sick. I hate that people don’t understand! I hate being seen as lazy! I hate being forced onto state insurance, being seen as welfare. I hate having lost interest in fun activities (too physically demanding), I hate having my dreams and desires on hold, I hate doubting they’ll ever come true now! I hate that fibro ruined my relationship with my boyfriend. I hate hurting, everyday, all day long. I hate battling with disability companies. I hate hate hate being fluorescent light intolerant!!!!!
I hate that I cant play in the park with my kids for than a min before i need a break I hate not enjoying rain I hate being so tired I dont even get dressed n stay in bed!!!!!!! FU FYBRO!!!!!
I hate that I have to agree with each and everyone hates! I hate crying myself to sleep, I hate taking all the meds, I hate that everyone thinks they know how I feel.
i hate that i go to bed hurting and then wake up hurting, i hate that i have to take narcotics every day to get such a little bit of relief, i hate that i don’t ever feel like doing anything, i have that i always feel so bad that i don’t get to go to any of the activity’s my daughter does i hate that when i do get up and go to the grocery store that by the time i am half way thru the store i hurt so bad i can hardly walk and i could go on and on and on
I feel the VERY SAME WAY on a daily basis!
I hate it all! I hate I have to keep a bag of meds beside me all the time everywhere I go, I hate that I get tired and have to stop less than half the way through a chore I need to do for the house. I hate that my child always feels the need to ask how I’m feeling everyday and how I have to ruin some plans if its a really bad day. I hate I am no longer a “productive” person and I am not able to do the jobs that I have the education and certification to do. I hate never having any energy. I hate that the couch is more comfortable than the bed for me and don’t get to sleep beside my husband for more than a few hours cause my hips and back hurt so bad. I hate the judgement from others at the amount and type medicine I have to take everyday. I hate when people say they have the same condition as I do and pop 2 advils or tylenol and it makes them better–they don’t hurt like I do.
I hate that I am not working, I hate that I can’t clean my home the way I want to I hate that I hurt I hate that everyday can’t be a good day. Thank you
I hate hurting everyday, I hate that I don’t feel like going to see my family more, I hate that I can not do the things I want to because of the pain.
I agree and also hate everything mentioned above. I hate that I also passed this to my oldest daughter, and she has it worse than me. I hate that my house is always a pig sty. I hate that I fight with my youngest daughter every time she wants to go shopping because I don’t have the energy to even think about walking around a store. I hate that she thinks I don’t love her because of this. I hate, hate, hate FIBROMYALGIA!
I hate that when I get out of bed in the morning every morning.I feel about 95 not 33 and my body hurts like i’ve got the flu everyday…No one understands!!!!!! That I still have to try and live a normal adult life,work,clean the house and take care of my children as if i’m not suffering ever moment….I’m an aide which I love but I want to be the person in that hospital bed most of the time>>>LOL…Besides all thatLife is wonderful!!!!! Bless everyone who has to deal with some sort of chronic pain.
I hate the fact I am always in pain and I feel like I am worthless because I have a chronic illness
This is great to hear all of this from others to know that I am not alone in my tears and frustrations. I am irritated the most by people who really never comprehend what I go through daily. I also cannot stand when that look of confusion or pity comes over their faces. I was such an active person and while I keep fighting, I feel like I am losing the battle. I cannot give up because I refuse to let this take everything from me. So I struggle through the pain and fatigue, praying for a break, in what seems to be a neverending flare! I long to be the physically and mentally strong person I used to be. Why can’t these damn docs come up with a better plan knowing how many people are pained by this? Why are we seen as jokes when we file for disability? I worry about my future…
I despise that there are so many millions of people that suffer from chronic pain, lack of sleep and not having a great support system within their own environment. After reading all these comments, I am sadden that soooo many struggle, yet I am delighted to know I am not alone!!!!
I just miss sleep. Real, deep, restful sleep!
Omg, I need to add one to my list. I HATE that my boyfriend down plays my illness and multitude of dibilitating symptoms, he gives me absolutely no empathy, sympathy, understanding, etc., he has called me worthless, he doesn’t even try to understand….. But…. When HE hurts, or is sick, or has a headache… He whines to me about me! And wants my sympathy!!! Really???? I HATE THAT!!!!
i hate that the pain never stops, hate that i can’t clean my house the way i used to, hate that i can’t go shopping without being wiped out ad hurting for days, hate that i don’t have the eergy t spend time with my kids, hate that this has robbed me from having a normal relationship with my husband, hate that fibro has destroyed my life!
I hate that I can relate to every hate above. I hate that I am a shut-in. I hate that I was awoken at 5:20 am on this Sunday because the pain was so…. intense. I hate that I don’t believe there will ever be a cure for this illness :/ XOxo… “God bless, prayers to all.”
I hate, HATE HATE all that fibro’s taken away from me ~ the ability to work, can’t walk for more than half a mile (the crippled foot adds to that), travel is so hard, hate that I can’t even clean my own home, hate that taking my dog to the park is so exhausting I’m laid up for two days afterwards, hate that even taking the top down on my car is too much, hate that I can’t remember so much of what’s been going on around me and in front of my very eyes, hate that the best thing I’m supposed to do is get some cardio, and I hate cardio because it just wipes me out, even when I start small and try to build on it. And I hate that very few people understand the insidiousness of this chronic pain disease shit. My husband tries to understand, but he still doesn’t really get it. But I WILL NOT LAY DOWN AND DIE, DAMMIT. I will ALWAYS get back up again.
I hate being this young and feeling so old. I hate being in tears after a day at the zoo with my boys. I hate the frustration of being unable to exercise and be in shape. So depressing. I hate taking so long to try to even get out of bed.
I hate not being able to have my old life!
I hate the fact that I am a fraction of the person I used to be. I hate the fact that I don’t want people to touch me because it hurts too much…
I rather die, that live forever kneeling…
I hate…that I could not get up to go to church! I hate that in the afternoon I went garage sale shopping (my favorite) and had to give up and go to my daughters house and lay on her couch because I was completely drained. I hate not taking any pain killers because out of my own free will decided to leave them cold turkey since last January. I will NOT go back on them. I hate the depression I have had for over 10 months, I seldom leave my house.
Even through all of this I am so thankful to God for His many blessings.
I hate that a good day is a 3 on the pain scale. I hate that everyone wants to compare my pain or muscle spasms to theirs and tell me to eat bananas! I hate that I never have enough energy to do make a shopping trip. I hate that look of disappointment on my husbands face when he asks how I feel today. I hate that no medicine helps more than it hurts. I hate that my house is dirty. I HATE FIBRO!!!
I HATE..that I am getting worse and that my brain doesnt work. I hate it when I hear people tell me to be POSITIVE as they dont know what else they can say. I HATE it when friends look at me and knowing that they are questioning my condition. I HATE it that I had to give up work..I HATE it that I cant plan anything. I HATE it that I cant go to the gym anymore and that I cant go for long walks. I HATE it when I go blank at the check out counter and feel so embarassed when I cant reply to a question…most of all I HATE not being able to jump out of bed and get dressed and enjoy the activities of the day! Saying all that…I AM GRATEFUL for the few activities I can do and also the love and understanding of my husband and girls
I hate that I can identify with what so many of you said. I hate not being able to make plans b/c I don’t know how I’ll feel from day to day. I hate going to sleep in pain, getting up throughout the night b/c of pain, and finally, waking up in pain. I hate that when I tell someone I’m not in a mood to talk, going out, etc. b/c I’ve been up all night in pain, that I’m told to “suck it up.”
I hate that my kids have turned into teenagers while I’ve sat in my recliner. I REALLY hate that. I hate that my daughter waited and waited for me to get better so I could pick her up again, and then suddenly she’s the same height as me and 13 years old. I hate that I can’t take her shopping. I hate that I can’t be there for my boys. I hate that my husband has to work his ass off all day, leave work early to pick up the kids from school (I can’t drive), comes home, cooks dinner, takes care of me, then finishes the remaining two to three hours of work that he has left. Every.Damn.Day. I hate that I can’t be intimate with him because EVERYTHING hurts. I hate that so bad. I hate the weight I’ve gained. I hate that I’m tethered to my meds. I hate that I cannot think, cannot speak, everything is either a “what’s it called” or a “thingy”. I used to be a smart person. I hate that I sleep until noon every day of my life. I slept until 2pm today even. I hate the cold sweats I get from the meds. I hate the aches, God knows I HATE THE ACHES. I hate that people think they know how I feel. I hate forgetting what I’m saying in the middle of my sentence on a regular basis. And wow, I apparently reallllly needed to vent! I do thank God every day for the blessings I do have though. Sigh.
I hate that I don’t sleep at night cause I wake up in constant pain, tired all day, and iritable from lack of sleep. I hate that the only time I feel good is when it’s a constant 100 degrees or above, we need the rain so bad. Which in turn makes me hurt like crazy. I hate not having a clean house, and constanly having to have my 16yr old son help me out cleaning and doing dishes. I hate that all the activitties I want to do I can no longer do. Like hiking, going for a just a walk in the neighborhood, and walk the dogs. I hate the pity, or the what’s that? With the look in return that I’m full of crap. I hate that I’ve gained so much weight and really have no energy to try to work it off. I hate when we actually go to do something I have to say I can’t stay out cause I hurt so bad I just want to go to bed.
(takes a deep breath- ouch) well thats the first hate, i HATE it when it hurts to breathe, i hate it that i can feel my blood pump through my body and my heart beat .i hate that each pump and beat is painful. i hate my feet being so sore it feels like i’m walking on hot glass shards.i hate the pain that moves all around my body. i hate the fact i have pulled muscles and trapped nerves 5 times in 3 weeks in my neck, back and ribs just from wiping my arse.i hate that my hands are too cramped and painful to type properly, to brush my hair, hold a phone or pen, hold a book up to read,i hate that it hurts to drive my car and that i have to take my kids shopping with me so that i dont have to push a trolley.i hate being hungry all the time but unable to eat cos my body says no. i hate it when i DO eat that i may as well chuck it straight down the loo as i cant keep it in.i hate it that i cant eat foods i used to ( like cereal/milk.cheese.bread ) i hate the way my eyes feel like they burning cold and my skin is sore to the touch yet sorta numb too .i hate feeling like a human scrunchie.i hate needing to pee 20 times an hour.i hate the migraines which last for days and seem to come in clusters.i hate the numbness, facial neuralgia,muscle/nerve twitches and poor balance.i hate the fibro fog and the way it affects my speach,i hate being fatigued but unable to sleep or rest, then falling asleep at the drop of a hat when i dont want to and having no energy.i HATE that i am having to go to a benefits tribunal because someone doesnt see that i am in pain and assumes because i struggle to do something and am not howling in pain, that it isnt painful. SORRY i have learnt that howling in pain doesnt make it better so (waste more energy doing that?)i hate the “officials” who assume we’re all fakers and that we can work/carry on and ignore the pain or be ” normal” because we’re on pain medication..i hate that i feel so issolated and alone and sad.i hate that i’ve lost people to suicide and always said i couldnt understand why they did it.. and although i wouldnt do it myself… i HATE the way i can now understand their desperation.. and finally i HATE the way i need to write this.sorry it was a long one.
I HATE that I can’t run like I could. I hate that a 2 mile run makes me feel exhausted like a 10-miler used to. I HATE the side effects of my celexa.
I hate everything about it. I lost my old life. I have no energy to do anything. Sleep doesn’t even help anymore! I just HATE it!!!
i hate that I am so tired, and lately so depressed. I hate the fact that I start something and have to stop because I hurt so much. I hate that just because I try to keep positive, people think there’s nothing wrong. I hate that people don’t realize how badly I feel sometimes. I hate that I forget what I am about to say at mid-sentence. I hate that I can’t lay still for more than a few seconds so I’ve taken to sleeping by myself, and not with my husband I hate that my skin feels like it’s on fire. I hate that I feel as if I am losing my mind. I hate that I am sick.
I hate that I missed my 30 year class reunion. Tiredness, achy joints n muscles wouldn’t let me leave the house. I hate I’m always drained, n when I do feel like doing something, it’s what I want to do and I don’t have the energy for others, n they think I’m being selfish. I hate that feelin, when my daughter calls n says let go out of town n I’m too tired/fatigued.
No, sleep is not refreshing…. Always tired.
I hate more than anything that the other day my 12yr old asked “mom, can I get Fibro” God I hope not.. and the days I have to say, not right now, I need to rest and dnt feel like it. I hate that I love my kids and husband so much but they feel like I never have time and energy for them…mom needs a nap is said way to much in our house… I hate that I’m so SAD…
I HATE when all of a sudden you can’t move your neck and it freezes up into the back of your head ! It’s very aggravating!!!
I HATE not having energy to do anything! i hate that my feet hurt and feel as if i have cinder blocks hanging from my abkles! i hate that people dont understand my pain! i
All I can say is you took the words right out of my mouth! I hate it, hate my body. Try to remember that God does not letting anything happen without a reason, and that Glory to Him will be given and that maybe I can help someone else. Or, at the least, understand. We are starting a support group on Thurs…
I hate hurting all the time to I hate not having any energy to.
The comment about not being able to eat caught my attenction. Have you tried gluten free? It has helped me. As a matter of fact, I went rebel and ate anything and everything I wanted last week, it sent me into an awful flare, worst than a long time. A few days of not eating it, and I am feeling a little better. I threw up everyday before stopping eating it
I hate that all but three of my friends have disappeared, even some that I thought would support me. I hate when people ask “how are you feeling today?” and I can’t think of anything to say that’s hones, because they want to hear “I’m OK”. As if I’m suddenly going to wake up and be cured… I hate that I got nothing done all weekend due to a pain flare, but I needed to do so much. I hate that I’m single and have no choice but to continue working, even with intense pain every day. I hate that my employer has threatened to fire me for being a few minutes late, when most days it’s all I can do to even get our of be. I hate sleeping with a CPAP, choking in my sleep and waking up feeling even worse.
I HATE that I don’t feel like “me” any more. Instead, I feel like a person that is 30 years older than “me” and those 30 years have not been good to “me”. I feel old and broken. I HATE that I can’t think like “me”, I can’t talk like “me”, and I can’t move like “me”. I HATE that I may never be “me” again. I REALLY HATE that I understand exactly how all of you feel! . . . And lastly, I HATE that we all have to put our thoughts into facebook because we are all the only ones that really understand each other. (((Gentle Hugs to All)))
I hate that I can not do things normal 32 year old people can! I hate have no energy to clean, exercise, play with my son, enjoy alone time with my sig other! That I had to call in this weekend because I was in pain, or at work that I can be out run by elderly people in wheel chairs! I hate that I am in constant pain, depressed and take more meds then anyone my age should! I hate that I have to spend a lot of $ on meds and doc appointments! I hate that I have to give up things I enjoy gardening, having an occasional drink, etc!! I hate it when you have to explain yourself over and over about why you never feel good or can’t do things you use to or why you move so slow! I hate that my son does not have a healthy MOM!! I hate when I can’t sleep or when you do sleep the pain wakes you up! I hate feeling isolated and alone! I hate that this disease controls every aspect of MY LIFE! I hate that people have to worry about me or constantly pick up my slack! I hate when people ask how you are?! I hate that sometimes doing the normal everyday things make me tired like taking a shower or walking up steps! I HATE THAT THERE IS NO CURE OR HOPE FOR A CURE FOR ALL OF US!!!!!
I hate that this disease has changed me as a person and stole my youth!
I hate that I can’t function like I used to be able to. I feel like something just took over my body and I cant’ do anything about it and I hate that. I hate that people do not understand my pain, my extreme fatique. I hate that after two months of working full time, I begin to get sick all the time, I fall asleep at the wheel and I start performing poorly when I actually think I am doing a great job. I hate that I can’t find a complete fix and I hate that I can’t enjoy eating what others can enjoy.
I also hate that all my “friends” are no longer around and never even call or invite me or include me in any event or outings they may be getting together. I hate the feeling of isolation, loneliness, depression and uselessness that I feel. I hate that I feel like I don’t have a purpose anymore.
I also hate that my son has to see his mom crying and is to young to understand why his mom is sad so much!
I hate all of the above constantly every single day!
I hate that I took my last Percocet today! I hate being too nauseated to eat! I hate letting myself down on my therapy goals because I’m so tired! I hate being looked at and spoken to like I’m a fraud when I need to use my disabled tag! I hate that there are days I’m too exhausted to take my medications! I hate that my insurance company feels it has the right to take me off of a medication that has helped at least some and force me to try an outdated antidepressant! And most of all, I hate that this post ever had to exist, for any of us!
i hate not being able to recall the last time i experienced a day without pain and fatigue
I hate that I have lost who is was. I hate I can’t do the things I could do before. I hate that my kids have to see me suffer. I hate I can’t do things with my kids when I want. I hate that my fiancé has to see me breaking down. I hate I can’t be the mom or fiancé I want to be. I hate that I hate so many things because I always taught my kids not to hate. I hate trying to act like I am not angry and hating all the time. I hate having to ACT happy or ACT like I am not in pain because people think you are weak. I hate that people think we are lazy! Thank you group. Hugs.
I hate that what I used to accomplish in a day or two now takes me a week or more. I hate how it has aged me. I hate how everything has to be planned in advance and even then I may not feel well enough to go. This was vocalized when my youngest was in grade school and he said “Mom spoils everything.” I hate that I will never fall in love again because who would want to be with someone who always feels like crap? I hate how it contributed to the ending of my 30yr marriage. I hate how my kids don’t care
I hate not being able to take my 2yr old to the park on my own…i hate not being able to have long days out with my children…i hate not being the way I used to be…i hate the fact even cleaning the house makes me ache so much I can hardly move…i hate the days where I cnt even get up my stairs…i hate wen im having a bad day and dnt have the energy to move so I lie on the settee and think that people think im lazy…i hate not being able to walk far…i hate not remembering wot it feels like to be pain free…i hate the fact I was a fit healthy person until my ex threw a bottle at my head…i hate that I worry how this is gonna affect me wen im a lot older…i hate healthy people who abuse there bodies and dnt know how lucky they are…i hate that some days im in to much pain for you to cuddle to…i hate that I could write loads more things about wot I hate, wen all i wanna write is how much i love waking up fresh and healthy…and most of all, i hate fibromyalgia exists and their is nothing to really help us x
I hate everything about fibromyalgia, the pain, the extreme fatique , the list can go on & on & on. I wish that I could wake up for once and feel refrehed and energenic.I wish my depression would go away. I wish that people would stop saying, well you look fine, why can’t you work. Fibro really really sucks bigtime…
I can relate to each and every one of you… I Hate not being able to sleep through the night without getting up and taking pain meds, I Hate that I can not sleep, I go to bed tired & hurting and wake up just as exhausted or more so, I Hate that I can no longer work, I Hate not being able to make plans and stick to them, I Hate not being able to spend time with my grandbabies like I want to… I Hate the feeling of fatique & not having the energy I used to, some days simple tasks seems like climbing a mountain, I hate the feelings of disappointment, worthlessness, depression, etc…. I HATE FIBRO!!!!!!!!!!!
I hate that I am in so much agony that I couldn’t enjoy my visit with my grandkids this weekend. I hate that I too have piles of clean laundry that needs attention and there are so many unfinished chores in my house because I am in so much pain or too fatigued. I hate that I need to give up today and take the demerol. I won’t say “good night” because my body apparently has other plans.
I hate fibro and all it does to a once healthy active body
I hate fibro, because I am no longer the person I was. Hugs for all of you who are suffering to.
I hate what fibro does to my partner, after her first collapse in November I felt like somebody robbed me of her like just one day I woke up and there was a stranger in my bed, after a break and a lot of hard work I am slowly getting to know the woman I love again. I hate that at 5 years old our son has to get his head around a complex medical condition and worries about Mum all the time when he should be thinking about playing and the park and just being 5… But mostly… I hate that I can’t do anything about it I hate how useless I feel every day and I hate that sometimes she looks at me and I know that she thinks I don’t understand when I’m trying my hardest too.
I hate tha I have to agree with 99% of the above, and that doctors and others just say it’s only in your head. nothing wrong with you. just get up and get going.
I hate that I have no life anymore. I hate that most of the time that I don’t see my kids. I hate that my gorgeous eldest daughter has to run my house and look after my children because I can’t. It does help that she still lives at home with me though. I hate that I’ve lost every body cos they don’t understand what I’m going through I do in a way understand how boring and depressing it must of been for them though. I hate that most days I can’t even dry and straighten my unruly hair. I hate that I spend days not being able to sleep then days when I can’t stay awake. I hate having to take pills every day just to get through to the next. I hate feeling so down and depressed. I actually hate being alive and I hate that I still can’t come to terms with the fact I don’t have a life anymore
I hate that I just at a breakdown and my husband feels helpless…I hate that my hands dont work and I cant even prepare a simple meal! I hate that every part of me hurts and all I want is for the burning feeling to stop. I hate having to vent on facebook and that how only fellow sufferers know what its like to have your independence slowly crumbling away :’(
I hate that I can’t walk, and have to use a wheelchair, and most places are wheelchair inaccessible – even if they claim they are.
i hate every symptom of fibromyalgia but what i hate worse is the medical industry that exploits it….under- mediating or over-medicating as how it suits their profit!
I hate waking up still with the pain I went to bed with, I hate not being the person I was, I just hate not being able to do anything in this Fibro state. Love and hugs to all x
I hate when people say “you’re too young to know what it’s like to have your joints ache”, etc. No one understands! I want my life back! I’ve had this since my late 20′s and it’s not fair but I have to deal with it. I hate not knowing how I’m going to feel day to day. I hate when someone accidentally pushes on one of my pressure points and I want to scream because it hurts soooo much! I hate going to bed early just so I don’t have to feel the pain in my sleep.
I hate that my house is the messiest of everyone I know! I hate that my teenage girl will never have a “partner” to help her train for athletics! I hate that loving my family through hugs actually hurts me physically!! I hate that nobody ever understands. And MOST OF ALL, I hate when people say that “they hurt too”, it’s just a sign of the times with aging and “I’m lucky I don’t have…….Whatever!!!! Whew! I feel better! Thanks!
I HATE that my loving daughter has this FIBRO…
I HATE that I am crying so much that I can’t finish reading (and ‘liking’ – want to support you all) all the comments. I HATE that I understand so well what you are all saying – except for the parenting bits (and that is another HATE – I was not able to be a mum because of Fibro). I HATE that I can’t do everything that I want to do in life, that I can’t plan ahead properly, that I often need to cancel/change plans (I was meant to go to a family party this weekend, but could not cope with the 6 hour drive each way), that I rarely get a good night’s sleep, that I mostly rely on painkillers to get through the day, that I cannot join in with my friends on their long horse rides, that I had to give up running (except for an occasional short jog), that I get confused and forget stuff all the time (I used to be a Director’s PA and super-organised), that I always get travel sick now, that it affects my wonderful hubby and so much more. Gentle hugs to everyone. Ali x
I have just been to opticians who told me the issues I am having with my sight is due to my muscle spasms and that it takes me time to focus and not my actual sight. Another bloody thing to add to the list.
Also missed out on going to London yesterday with my daughter and a friend as knew it would be too much and would end up spending rest of week in bed. They ended up seeing stars from jls, diversity and pussy cat dols as well as chance of being on tv. All cause of stupid condition. Have missed out on so many things this year including my nephews 21st birthday party. I never know til last minute whether I am gonna be well enough to go anywhere.
I hate that it took my life away from me! I hate crying so much from the pain. I hate having to rely on medication. I hate EVERYTHING that has come with this demon living inside my body. I LOVE getting it out to vent. This was a great idea! Thank you!!
I hate when people think I am lazy because I always hurt and my energy drain, I hate the ideas of living of Fibromyalgia and make me wish I never wake up and go through another day of suffering, I hate when I am sad or need nap a lot. I hate when they judge me without understanding what kind of day I going through. I hate when there is no cure for Fibromyalgia. I hate when people think they can tell me how to eat or do to cure the pain when it is not working as all, I hate when all I thinking of just ending my life because I can’t deal another day of endure pain. I hate when people think I am faking it when it so real. I hate when I cried all the time knowing I break my promising when I can’t get up and do it. I hate to feel the burn and aches. I hate taking pills knowing it will destroying my livers, I hate everything about the fibromyalgia that I had to live daily. I really HATE my life the disease that I had to carry on for the rest of my life.
I HATE the fact that I could have written any of the above, the fact that I cannot get a proper breath tonight has not stopped me sobbing madly with total understanding & empathy for you all, but, I solemnly swear now that my confusion & depression regarding this demon has turned to anger which has given me a quest for answers & I will not be silenced until I get them for us all. Stay strong in mind & we will beat this together! xx
- Just get lost for one day…. (whatonearthisfibro.wordpress.com)
BUT, after (unwisely) choosing to walk to where we were meeting, I was (um…) slightly scattered. Sign here. Date here. Sign here now. Another date. Blah! Blah! Blah! Okay – completed. Now photocopy five times, staple and certify every page (that’s 15 pages!).
Firstly, I stapled the pages in the wrong order. Then I had to ‘unstaple’ the pages. Then I still stapled some of the pages in the wrong order. What the -?
Then it was certification time and I don’t have my own stamp – I have one at my office but not in my travelling lawyer kit. And one would think that after the first ten times of writing this is a true and complete copy of the original, I would be able to remember it. Nope! Wrong!
So, I guess this confirms that not working is probably a very good idea, Your Honour.