A DAY IN THE LIFE OF FYBROMYALIA

Shouldn't be drinking coffee but I don't drink or smoke..So I think to myself what the heck and have a bar of chocolate as well lol

My heart goes out to you sadie..3 children to look after as well. You need a medal..

Thanks Hun lol I'm doing be in most days lol and I work full time xx

hats off to you sadie working full time and 3 children to look after how do you do it bless you x

I don't no Hun I really don't my 16 year old does a lot for me like cooks and looks after the 1 year old and the 12 year old drive me mad !!! I do have a cleaner to ! I've had a terrible two days I've just felt drained and tired I have had a bad cold to so just feel @"?!; !! Me getting my pip helped lots I only got the standard rate but I'm happy with that

Thank you for your lovely positive response.  You are so right that we are not on our own and people are a lot worse off..I totally agree in a gratitude journal as i have used one before many a times to get me through difficult periods of my life and yes a sense of humour is very important..

That is a very positive way of looking at are health care system.. We are a lot more fortunate than other countries and you have made me think how I need to realise that.

Sorry to hear you lost two of your friends very difficult time for you..

Wish you all the best

 

A sense of humour is the only thing that is keeping me sane just now, if I were ever to lose that then God help me xxxxx

I did lose my humour for a long time but its on the up hence the post lol

Lol, I'm so glad you have your mojo, we really need it

Oh and coffee does help, caffeine can be a life saver with our illnesses x

You are doing just fine sweetie. You are a strong courageous woman as so many of FM women are. Giving ourselves what we need in the way of rest and care ...without guilt, is what we all need to learn. It is always worrying about and taking care of others and going beyond our own limitations that have often gotten us where we are today. We often lack balance and demand ridiculous expectations of ourselves. We would never treat a friend or loved one the way we regularly treat ourselves. Living and learning life lessons; that is our goal. xo

Good for you Trisha! And yes coffee helps with migraines. 

I regularly feel guilty when some days I can't find any energy to do daily chores and my family who are having to come in from work and pick up the slack, I feel as if all I do is apologise, family great but this illness is for life and none of them signed up for it, that's when I give myself a hard time and can get really depressed.

 it comes and goes depending on the day.. I use to be very bubbly, positive and always laughing until i took ill two years ago..My health knocked me for six and its taken this long to get back..But keep the coffee going ( throw in the odd bar of chocolate) and we have lift off lol.

Thank you Magpie..

Totall agree we need to be kinder to ourselves..Yes I have high expectations to the point I believe I am going to get better..Even my docotor hopes i will.. I guess time will tell as iam waitng on more results for my thyroid..

It makes me sad to hear how so many women underestimate their worth. Apologising for a condition that you are not responsible for or feeling guilt is counterproductive to your health Trisha. We build these things up in our minds and often our families do not think like that about us whatsoever. They are just grateful to have you in their lives Trisha. Don't believe everything you think! Know your worth girl and begin to realize how much you have done for your family and what a loss it would be without you. How would you feel if one of your loved ones became very ill with say, mononucleosis or arthritis. Would you think to yourself, 'oh I didn't sign up for this! What a burden this person is!' Oh my goodness, that would not even cross your mind! You would have compassion for them and you would want them to take measures to cope and preserve their energy. Why would you ever think that your family members would think otherwise. So have that compassion towards yourself Trisha. Stop that negative thinking as soon as your thoughts start in that direction. It is just not true! You are precious to your family and friends. Know this! Maintain a more positive outlook and build your self esteem and self worth. Get some books on this. Do self esteem tests online. Take a proactive outlook to counteract these ideas. xx

I know you will get better Laura. We are often our own worst enemies. The negative thoughts are usually what drains our energies. Have faith my dear. You will succeed! 

Thank you, and to be honest I do try and think different, it's still that acceptance thing, that I have this illness amongst others and try to be positive of what I DO have, a great family. I know your right, it's just it's sons I have and loved looking after them. It's my problem and most days I kick myself for thinking this way, all they want is me at my best, and sometimes I can't deliver. However I know they would do anything if I asked them. I know your right, thanks for reminding me.

Hi Laura..

You have just discribed me to a tee!!!

I HATE having to ask anyone to do things for me and stupidly think I can do this myself if I take my time and pace myself!!. What follows is exactly what you have descibed. I do try to keep my sense of humour but sometimes the mask slips..lol.

Can I ask what problems you are having with your thyriod. I have also just discovered I have nodules on mine after a scan. I sometimes hope that that the diagnoses is wrong about fibro and it is all my thyroid and one magic pill will make me well again !!!  even tho the doctor says no!

Wishful thinking !

hope you are feeling better ..now i am just off to try and put the furniture I decided to move around today, back exactly where it was lol oh .. and have another coffee !!

Amanda

Hi Amanda

Lol Glad your into coffee..

I am very independent and have always done everything myself and that is the most frustrating thing of all..I live on my own so if I can't do it then I have to either have a good cry or just wait until I can lol..I am having to ask for help nowadays and I have to say I hate it..

I have an under active thyroid and my tests keep coming back clear.. My specialist has now taken a T3 test as I am not getting better and upped my levothyroxine to 100mg and told me it very rare this does not make things better..Well I am not better so waiting for my next appointment to see what he says.. Like you I am waiting for the magic pill to make me better and hoping its not fybro..

Would you like some help to move your furniture?? OOh sorry having a fybro day lol

I was moving furniture this week as well lol..But i suffered for it...

I am in Australia so early morning here now. I really wonder at all the demands we put on ourselves over the years. All these comments are very revealing. We really need to understand where this perfectionist ideal comes from. We are SO hard on ourselves. Mine comes from verbal abuse I suffered as a child up into my teens. Then I married a verbally and emotional abuser and was in the marriage for 22 years. I suppose when you never feel that you measure up for so long, you begin to believe it. I have since really taken inventory of my own perception of self. I can attest to it Laura and all the other ladies, that this is at the CORE of a great deal of physical symptoms. There is tremendous stress associated with our feeling not good enough most of the time. Every thought produces an emotion, whether positive or negative. Subsequently, these thoughts have physical affects as well. Just think of how your body responds when all of a sudden you become embarrassed. Ok, your face turns red and you can actually feel the blood rush to your head. Or when you are frightened; your stomach cramps up and your heart rate increases. Worry; you often get a headache or a neck ache. A great deal of backache is also associated with anxiety and worry. So never underestimate what affect your thoughts are having my dears! It is like a downward spiral. That is why I keep stressing about cognitive control. Learning to argue with the nonsense in our heads, can have an amazing result. I remember reading a book by a doctor, and this is an old book, it is about Mood therapy. It was life changing for me. He was a psychologist and he said that one of the best exercises we can do is absolutely Simple. Take a paper and make a line down the center. On one side mark Automatic Thought, on the other side Reasonable Response. On the left write down all the negative thoughts that are going through your head. On the right, reason with yourself to determine whether it is an absolute Truth or rather .....Irrational thinking. Reason as you would to a loved one or a best friend. Wow! It is extremely revealing how Off our thinking really is! Try it. Be your own Best Friend. xx

What a lovely piece of writing and all very true and I can relate to so much of it, I think this is where we find friends whom actually really do know how you are feeling. Without feeling as if you have to have a leg or arm hanging off before some people actually listen to us. Well done maggie

Awww Thanks sweetie. Well it is one of the best lessons I have learned. Know your worth and your life will improve in many ways! Fibromyalgia Ladies are some of the most amazing women you could ever meet. Sad part, they don't know it! 

Because we are all too busy trying to keep standards up or watching everyone go out and have many a good night out, and they don't bother even asking you anymore instead of maybe adapting the usual drinks in a pub, to maybe just come and visit x

It took me many many years Trish to learn to be happy even just by myself. Never look for approval or understanding from others. They are usually too wrapped up in their own lives. It is hard for someone who has energy and a level of good health to understand another's limitations in this respect. I really think that self sufficiency is the key to our own peace of mind. Being content with our own company can be a real freedom. We often become codependent over our lives because we seemed to always look for the approval of others. The only approval you need sweetie, is your own. Forgive them for their oversite. Everyone is struggling with something in their own lives. Build your own sense of value and belonging. No one can give us that. It really does come from within and some deep soul searching.

Good morning to you and its evening here in the UK..

My  perfectionism comes from having two mentally abusive parents that where never there..A lot of different trauma's, mentally abusive partners..

I totally agree that it has a knock on effect on you physically and mentally.. Hence the reason I suffer depression and anxiety.. At times I can get on top of it and live a very happy life and then things happen in life and knock you back for a while..It would be unrealisitic of me to believe now that I can bury it totally as I have thought that before.. But the mind has a way of protecting itself when things start to arise again and at times you don't even know its happening.. Trauma causes a lot of irrational thinking and  being in fight or flight mode as self protection can happen through triggers.. Very hard to get on top of at times..Probably because everytime I have something else has came along to add to the list..I could go why me but I look at myself as a strong perosn that has survived and keeps getting back up..

Like yourself  I have tried different methods and read loads all in  trying to help myself. Cognitive therapy only worked for me in certain situations...I am a great believer self help.. I also believe my experiences have made me a better person today. I don't conform to what people want me to be, I stand up for what I believe in and I am not afraid to speak my mind..I treat people how I would like to be treated myself..

I suppose I learnt at a very early age I couldn't rely on anyone so became self sufficient..I knew what it felt like to be dependent on someone and that to be taken advantage of and I was not going to beholding to anyone..

I still would try different things to help myself like relaxation, mindfulness, gratitude list etc etc..

Hi Laura

Thanks for the offer..lol  all done now and having a coffee !!

I do live with someone and believe me when you ask them to do something and you can just tell they dont want to and give the "look" then I would rather live on my own lol.. thats why I have moved the furniture because the other half gave me the "OH man look" and I am determined to never ask anyone for another thing !!..lol  till I have to..and I hate relying on anyone. I used to live on my own and was the most independant person and wanted it that way..thats why this fibro is so hard. Like you say you feel better and think I can do this no problem...then your watching someone else finish things for you because you have nothing left inside. No-one understands  it unless you have fibro !

Sorry you are having such trouble with your thyroid!.

I originaly thought my symptoms were thyroid but all my tests came back normal, then in January I noticed a small swelling in my neck. The doctor sent me for a scan and I had multi nodules on it and was sent to an endocrinologist. I have to be scanned again in September as one of the nodules needs checking forever (or until it needs to come out!) and have my bloods checked every nine months for ever too as I will swing between hyper and hypo until it settles one way and then they will medicate me accordingly!  So I just have to wait for now because the endo says my thyroid is holding its own at the moment and my tests are fine and puts everything down to fibro..but how do they know for sure.

I hope you get help at your next appointment!.

Amanda

 

You could be a therapist, you have such a lovely generous way of writing and I wish to thank you so very much xxxxx

You are definitely a Survivor. Depression is another matter as well. Good that you are aware of what you need. Meds also have their place and can certainly help. They are often a life line in coping. But yes, our thoughts sure do have a powerful affect. Glad that you have the wisdom to apply different methods that work for you. You are an amazing person. Never despair. Life does throw us many obstacles. I have had my fair share. However, I have a very strong faith in the Creator which also gives me an inner strength and hope. I am grateful for many things in my life despite the many disappointments. 

I didn't have a very good childhood either, a lot of violence, however I learned that wasn't the way to raise children so I did the exact opposite with my 2 boys now ages 30 and 28 who I am so very proud of these two young gentlemen xxxxxx

Lmao you sound so like me.. Thats why I hate asking anyone to help that look is enough to put me off..

Good for you getting the furniture sorted..Go Girl lol

I was wondering how to know if you have nodules  be aware of swelling ).I have constant throat and mouth problems.  I got  diagnosed with a sweling on the brain (anuersym which has to be monitored) Give me a break my head is saying.. Its probably the same for you..

I wouldn't be surprised if my T3 comes back normal and I like you am totally Fybro..Then I can come here and constantly moan lmao..I would comes to terms with it better when I know for sure..But as you said how do they know for sure as so many other illnesses have the same symptoms.. Guess we will just have to suck it up and keep drinking coffee lol

 

I want you to know your worth Trish. xx

Hi Trisha

Yes I done the same with my daughter now 25 and brought her up myself Her father had no interest..She graduated and is in a good job now..So like you very proud..I think it makes you more sensitve, caring , thoughtful, kind and empathetic when you have been through so much yourself.. Although I feel in some ways I spoilt my daughter and over compensated for a lot.. But sure she has truned out well..

I do feel very pleased with myself for just getting on with moving the furniture...I wont tomorrow when I am suffering for it ...but it was worth it  just to see his face

What sort of problems are you having with your throat and mouth ?

I have suffered with throat problems for ages before I saw the swelling...I often get sore throats and my voice goes very hoarse for no reason. I also feel like something is stuck in my throat or food goes down very slowly.

Sorry to hear about your anuersym. How did you find out you had that?

It is such a pain to live the way we do daily and have the constant worry that something else might be wrong too. I think if I had the choice I would rather get the nodule removed now rather than wait and have the worry every six month or so that I will get bad news. How often are you monitered.

Feel free to come here and constantly moan to me if you want ..lol  I get exactly what your feeling !

Amanda

 

Thank you.. Sounds like your a surviour yourself with a lot of wisdom..I do think you need to believe in something to get you by in the most diffiuclt times.. 

I don't feel anti depressants work alone.. I feel you have to put the work in as well to change your thinking.. As its your thinking that is part of what takes you into depression as well as chemical imbalance etc

One of the things I wouldn't change about my life is my laugh..I would laugh a lot and its got me through some very difficult times..I lost it there for a long time. But in my darkest days its what kept me going knowing I would get it back..I have seen so many people that don't laugh easily, don't enjoy their life, don't appreciate things..I guess people that get the hardest of times gain a more positive outlook because they know at times it can be fleeting..

It is the majority of people now who have had difficult childhoods. Sad. But you have learned to rise above your circumstances Trish. And you have raised some fine young men. Cudos! So now this is your time to build your own self worth. Your boys can appreciate the amazing woman who raised them. You need to find some peace and contentment and feel the success you have had. 

I love to see how people help themselves not to stay stuck. You have done very well Laura and you will continue to succeed. A sense of humour is so important in life. I have a laugh out loud often even just watching cute videos on FB. I love animals so much and they give me so much joy. Here in Australia, I feed Cockatoos and Galahs and Parrots every day. To see these beautiful creatures and interact with them, oh my! It is such an uplifting experience. We have to find joy in simple things of nature. I drive into the country now and then just to see the beauty. It really helps put things into perspective. 

And so you should be proud of yourself..Bit of a stubborn streak going on there ?? LOL

I was sent for an MRI scan to check my pituitary gland because I have been unwell two years and wasn't getting better and they found that instead lol..

My throat gets hoarse, sometimes I spit a small quantiy of blood..My adams apple or that area always feel tender, I get soreness around  what might be my glands on my neck.. I constantly have a pitted tongue and problems with my gums.. I wake up with the taste of blood in my mouth..I do have difficult swallowing and the nausea has been horrendous..I constantly feel i have sinus problems, or a cold or allergies..(and to think that is a small portion of what is going on lol)

Do you get all this??

Yes it is a constant worry as I no sooner get over one ailment and a new one arises.. Any wonder we get depressed or feel worn down..I am in the world book of records for the Hypochondriac that really has the symptoms lol..

Yes I would feel the same as you with the nodule and wanting it removed but I suppose if its not causing you any problems they will leave it for now same with my brain lol..

I see my thyroid specialist every 3 months at the minute..

OOH wow you have beautiful birds to feed.. I got myself dogs to keep me company as Icannot get out and about often and they are best thing I have done to date.. So funny,lovable and their characters are brilliant,,

I live with the countryside all around me and feel I am so fortunate not to live in a concrete jungle.. The sea is only a few miles away.. I would totally agree nature most definitely puts things into perspective and makes you realise at times how overwhemling life can be at times just to keep up and be part of...

So happy you are surrounded by nature. England has such a beautiful countryside! And the sea air is so good for us. It seems to calm our nervous system. Yes simple things that feed our soul!

Not so much stubborn..more tired of feeling like a burden..lol

I get the nausea and tenderness around the glands. I cant have anything touching my throat area...roll neck tops and the likes..I have a lot of acid and have to take meds every day for it. Sinus problems are a constant for me too..always feeling like the next infection is on its way..also pains in my neck to my ear quite often. I feel I need to clear my throat a lot.

I have also been considered a hypochondriac by most for years before fibro diagnoses..its a relief to be able to put it all under one umberella and say...its my fibro isn't it ?

Luckily my children are older (26, 25 and 15) I dont know what I would have done if I had felt like this when they were younger!

 

Cockatoos that come to the feeder. I hope you can see the picture. 

You shouldn't feel like a burden, but I know that is easy to say..

Yes I have constant stomach problems and bloatedness..

I tell the doctor I feel like a 90 year old hypochondriac lol..

Yes at least we can put a name to it now although I keep thinking my symptoms are thyroid related and the aches, pains,stiffness are fybro..Or maybe its something else lol..

Yes thank God your children are grown.. My heart goes out to anyone that has young ones with this

 

OOH yes white ones and the backgorund looks so green and healthy

I rely on my other half to get out and about as I tire so easily and often have to come home with crashing fatigue, so it is had to stop feeling like a burdern. I had my children young and I didnt imagine this would be the life I would be living when I was 45 and had a bit of freedom for the first time!

I also live in the countryside and really do need to start apprieciating it more!! I make plans to go out for a small walk with hubby everyday but sadly fibro and lack of motivation can make that hard.

Oh I also have the bloating issues....Its so hard when all the symptoms could be either fibro or thyriod!

Yes a real joy these lovely creatures.

Sorry was shattered had to go to bed..

I totally get the no motivation because you feel worn down by it all..i would say this is the best week I have had for a very long time..

I also understand the unfairness of it all as I had a very active life before all this..It having to come to terms with it..Doing the best we can like moving furniture or lifting a cup of coffee lol..

Did you get your T3 tested??

Hi

Hope you are having a good day !

No I dont think I had my T3 tested ??  The amount of test that go with the thyroid is baffling isn't it !.

I just have to trust what the endo tells me for now and basically wait until it stops working AND shows in my blood tests.

I will let you know how my T3 results go just in case this is part of the problem..

 

How are you doing Trish? Reading again what you mentioned about your difficult childhood, my heart goes out to you sweetie. I am so sorry that you had to live in a fearful environment like that. We as children are absolutely victims to our upbringing. I have always had a special place in my heart for children. The innocent ones. So many little ones grow up in a volatile or abusive household. It breaks my heart! You have done so well Trish. You are a loving mother. But please give yourself attention in the way of pampering yourself now and then and building your self worth. I wish I could have been there back then for you. Even one person can really make a difference. Our parents were victims of their own environment growing up as well. I was fortunate to have a pretty good family except my brother was verbally abusive. There is a great deal we can do to get the trauma or negative msgs out of our heads. That is why I stress the fact of getting to know who you really are. Sort of like getting to know a new friend. You will be amazed at the qualities you have Trish. Thinking of you. 

OK  Thank you

 I hope you get the answers you need!!!

(fingers crossed for that little magic pill !)

Thank you, in a way it made me stronger, forgiving person, however I don't tolerate violence in any way, I suppose we all have our demons some dead and some very much alive. Thanks again for your wonderful words and thoughts.