I have now had this condition for around three years which I know to a lot of you isn't very long at all but to me it seems a long long time.
But I have found over the last couple of weeks all I seem to do is complain about different things that have happened to me. I used to be a very positive person but try as I might i just can not seem to stop.
My dishwasher stopped working 3 1/2 weeks ago and at long last the engineer is coming on Saturday to fix it, it will be 27 days since I first reported the fault, I did leave it till 2 1/2 weeks after being told the part would only take a couple of days to come in,before I started to ring and chase them, only to be told half the time " that I do not exist" and the other half the engineer has the part and will be ringing to make a appointment. It did seem strange that although nobody could get it done any quicker if it had got to 28 days I would be entitled to a new machine!.
The pharmacy which I have been using had "lost" or as my mum was told" never had my last prescription "even through it was sent over electrionally ! So she went off to my sisters with me not having the tablets I had run out of. As soon as I had no one to collect it, after a couple of phone calls, and one from my doctors to them, they found it and told me I could go in and get it now. I did ask why they had not given it to my mum and I was told " it had been left on the side", which is worrying as it had my Oramorph in.
And lastly which has really put me in a downward spiral is last September I was referred by the pain team for acupuncture and was told there was a bit of a wait. So I waited, phoned in January and left a message, nobody got back to me. Phoned in middle of February and spoke to a lovely lady who told me, someone had forgotten to put me on the waiting list and I would now not be seen until at least april. The lady said she would speak to the nurses and try and get them to fit me in as I should of been seen within about 8 weeks. Well I am still waiting for her to return my call. Then last week I tried again, the lady I had spoke to ( they think) is now on holiday, but someone else was going to sort it out and ring me back and you guessed it I am still waiting for the call.
I really do not know what I have done to get such horrible treatment from such a large group of people. All I can think of is that I must of done something very bad in a previous life!
I just do not know how to start being positive about anything.
My fibromalgia is getting worse and now my doctors thinks I have some sort of central nervous condition as I keep falling over and my hands don't work so good and I keep dropping things. All of this is making my depression hard to deal with and I am finding keeping on top of housework etc overwelming and cooking a chore. My daughter has been put on a FODMAP diet for health reasons but it is making cooking so very difficult. She can not have gluten, dairy, beans and pulses. She is only allowed certain vegatables ( no onion,garlic,leeks, celery, ) and some vegatable she is only allowed in small doses and the same goes for fruit. And there is what seems like a ton of other foods she is not allowed.
I really wish they was a way for me to snap out of this, even the physiologicist ( think that's the right word) is off sick. You really could not make this up if you tried
Any help to put me back into a more sunny frame of mind would be warmly welcomed
As you can see from the time of this post, sleep is not so good as my hips are really bad so I can't lay on either side and I have never been able to sleep very well on my back.
See what I mean, still finding things to moan about
Caroline
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Carolinee71
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It does seem you are experiencing many challenges. Maybe you truly need to express your frustrations? It's not unhealthy to express our frustrations as long as we are not doing so in a destructive manner. How do you express your emotions, including the ones you may not be so proud of -- like anger, frustration, sadness, etc?
It's tough, I know I used to express my emotions through very intensive athletics. I have had to cut back on those types of activities. Now what do I do with all of those emotions and pent up frustrations? I work them out in other ways, with more gentle, yet tiring, semi-athletic endeavors.
As you tell your story, you have every right to feel frustration and other emotions. Don't suppress them, express them, work them out.
Great to hear from you and this is a very important topic. The more emotions we suppress, the more symptoms we are likely to experience.
Allow yourself healthy ways to express all emotions.
I don't know where to start. Yes I do lets start with how you lie in bed. That sounds bonkers but how you lie makes a tremendous difference to your quality of sleep. So do you lie on back, tummy , side propped up how?
I sleep with my legs over a pillow so they are raised slightly. My head and shoulders start of semi up right and gradually I slip down do activities willy I know but with good reasonthe bed. I think by the time you have concentrated on finding a good position where you are reasonably comfortable you are so weary you have little problems visualising some relaxing scenario and then youappy endorphins sleep. 3 4 hours maybe. It is important that you wake relaxed dont worry how long you slept for you can power nap later.
Why am I banging on about bed, well we spend a lot of very useful tome there. It is when our body mends itself and our brain power block recharges.
We can help your disposition a little and as they say from little acorns great oaks grow. Finding release from worries pain stress well we have different slots, games activities that we run on site. Why well diversion is the begining for a smile. It also helps to produce the right happy endorphins that make us feel better!
A good giggle does mor for us that crying. So please join in see if we can all help each other !
I have the most tremendous empathy for your position and discovering how to cope with pain and life is the big challenge. We can all help each other.
Good luck do post me if you want
x Ginsing
Good morning Caroline, Im not surprised that you need a moan, many `healthy `people would feel the same so dont feel guilty about it.
Hi Caroline, so sorry to hear how bad things are at the moment. When you are struggling with pain and lots of other problems it can feel as though the whole world is against us! We can all relate to that feeling. One thing I will ask is, have you ever had your B12 levels tested? It's just a thought, but if your B12, ferritin, folate and VitD are low it can make any pain you have a lot worse. Sending all good wishes that things will improve for you. MariLiz
Sometimes when we get a lot of disappointments and frustrating things happening, it is hard to feel that it is not personal. I too have the prescription issues, the number of phone calls and visits my husband has made to a very well known brand of chemists beggars belief.
My local health centre does not take repeat prescriptions, they all have to go through the chemist first. Often there are things missing, which then take another 48 hours to wait for a new prescription, oh and the number of times I ring to ask if they are ready and my husband goes to collect only to have to wait while it is all being made up.! It doesn't help that there are 14 different items each month, so plenty of reasons why the whole process is a nightmare.
I have resigned myself to this just being another thing that is the way of my world and now I have accepted it, it doesn't get me as angry as it used to. The more I tried to involve myself in getting it to run smoothly the more frustrated and angry I became.
I too have been left of of hospital appointment lists, you do have to have your wits about you to spot when something is not right and not to leave it to chance. I had an appointment for an operation pre-assessment that arrived after the proposed date of the operation. As this was for cancer surgery you can imagine what state of mind I was in. It was all supposed to be fast-tracked but took over 4 months from diagnosis to treatment.
It is difficult not to moan when the world seems against you so I can empathise with your situation.
Try not to let it get to you though, perhaps you need to take the glass half full approach and look for the positives, although I accept sometimes it is hard. It is normal to get stressed, it's how you deal with it that matters, moaning is not really going to change the situation.
That old adage "count your blessings" can really work. Yes, my involvement with the chemist is dire, but at least I do have medications that can help me, not like third world countries. I have hospital appointments that may get cancelled at short notice but at least I do not have to travel for hours to get there. I have care from the NHS which I do not have to pay for, and my cancer has gone.
In the grand scheme of things I count myself very lucky.
How frustrating for you to have these issues all at once...but can I say...you're not the only one!...there isn't a conspiracy against you... and I'm sure you didn't do anything bad in a former life! I think it would be helpful for you to have a course of CBT to change your thought process into a more positive mode!! It's easy to fall into the trap of "woe is me" and difficult to get out of. People will become bored with the moaning and grumbling about every little thing and won't want to listen! One of my best friends was like this for such a long time, I had to block her calls as I couldn't bear listening to the same issues over and over again! Then I told her!!!.....It was quite a shock for her to be told but I didn't want to lose her as a friend and now we are in contact all the time.. She also has a chronic pain disorder but now we help each other through it and she says people have noticed the difference in her!! So that's my job done!!...hahaha.. CBT is definitely the way forward my friend!....much love....ninja....xxx
Oh hun you have a right to feel like this, but please don't be hard on yourself just take each day as it comes life can be hard for us but we do need to pace ourselves what done get done today there's always tomorrow, you will be OK hun
Don't worry about moaning Caroline you are just letting off steam after a series of events that would make a saint scream let alone someone who is ill. Lack of sleep also makes everything seem worse as unfortunately I know.
I have been there with hospital appointments twice with Pain Clinics for acupuncuture treatment having someone not tick the drop down box so I had been taken off the list. Had to wait 8 months for treatment instead of four the first time so learnt the salatory lesson of if i had not heard anything in 3 weeks to chase it up and yes this time I had been left off again. The secretary felt so sorry for me after i told her about the first time that she actually brought my treatment forward by a month which I felt was a small triump against the system.
Gins suggestion about the pillows is good as that is what I do and sometimes just a piece of foam with a towel across the top where you are going to lie the sore hip on can just help and cushion it enough that you can get a bit of peaceful rest even if you don't sleep.
I don't know how old your daughter is but could she help with the housework even if it is only dusting and tidying away and perhaps do a bit of cooking.
Try to give yourself a little treat to get your spirets back up and be gentle with yourself.
Now I have to tell you I have had this awful thing since I was 12years old over forty years ago .I remember back and the first years were the worst although I have lots of other things wrong and suffer more pain .I think you get used to this disease and find ways to distract yourself ,a hobby is vital .Im not saying the pain is any easier because honestly it isn't .I fall often too and my hands won't work on things like peeling potatoes etc ca t open a jar to save my life .Im positive person but those first years which you are in now we're hard and there were times I wanted to die .I went on to marry a wonderful man ,have 3 children that was tough because I also have ME so you can imagine ,but I did it
and so can you. your tougher than you know .ps I never can sleep much .Come on girl get a hobby it was the making of me .Keep in touch if you need support. Blessings 😇
I just wanted to offer you some moral support. I am so sorry to read that you are experiencing such a rough time and I genuinely hope that tings pick up for you soon.
Hi thanks to everyone who has been kind enough to answer me, I am truly touched by the feeling of support. Just to clear up a couple of things, yes hobbies are good and mine is gardening, I do a lot on good days and read about it on bad. Also yes I agreed on the face of it CBT is a good idea except the lady who I see is off sick! I do look for good things and my two amazing daughters are the best think I ever could of done. I sing both there praises all day long I just love them to pieces.
We also have a old cat called trouble who gives me the most wonderful cuddles, never knew a cat could cuddle back but Trouble can, along with following commands, you know sit stay,roll lay but doesn't know the word bedtime and a lovely new kitten called Obi who gets me up at the crack of dawn every day. He comes running in to see me with his tail all bushy and full of fun. He is a norwegian forest cat and although he will be the size of a dog when fully grown he gives me more entertainment than the telly
I hope at least some of you have had a good day and that most are fast asleep.
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