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No drama. This is my reality.

Posted , 7 users are following.

nicola51831
nicola51831

Inside my head: it's dark and lonely, it's painful and cold. Echoing pain grinding away, at the point of breaking and giving up. No relief just a hurricane spiral. Put a smile on, rub your eyes, today is a new day, look in the mirror, oh who is that?? I don't recognise you!! Dark circles, blood shot eyes, pale skin, you look like something out of a horror movie sad. Ok. So wash your face, OH then it hits, the pain as you raise your arms, shoulders, neck, elbows, wrists and fingers, burning, stabbing and bruising, the pain in your face as you see the person you once we're is no longer there. Ok so I get dresses and start the day, OH NO I could scream, trying to put on my socks, my back, hips, knees, shoulders, neck and arms....well you know how it goes!!! Iv ben awake 20 minutes and feel as though iv been doing an intense work out .. A mild way to put it.

So go down stairs.. trying everywhere possible to avoid the pain- but it won't ease up, one step at a time, did some one beat my legs with an iron bar? Burning, bruising,sharp stabbing with every single step. Now that that's over- time for a cuppa, milk and two just what I need when I get up. One sip- OH EOW I could scream again, the pain! Like every nerve exposed in my mouth, pushing on my cheeks against gums trying to ease the pain, then I feel my cheeks start bruising, shooting pains into my head, please someone take a hammer to my teeth I'm begging you!!

This is the 1st 30 minutes of everyday. Could a non sufferer cope with this?? So forgive me if I shed a few tears, I try so hard to keep it in, to not let the children know how I'm suffering, but today I can't , today is just too much. This is not a flare up, merely just the basics, and today I'm not coping so good. Tomorrow will be better?! But for right now Iv had enough.....

Gentle hugs xx

3 likes, 16 replies

16 Replies

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  • deirdre._03652
    deirdre._03652 nicola51831

    Posted

    Dear Nicola.....my heart.totally and completely goes OUT to you my LOVELY.....

    I so wish I could help in some way....Nicola...please, president, please call for help.....999..if the pain does not ease.....you cannot endure this !!! It is not right.....

    Call all the family and friends who can help you....but please do not forget 999. You are entitled to ,,, and deserve help. For both yourself and your children...

    You are in my thoughts ....HEART....and PRAYERS....huge huge hugs to you...and lots of sympathy and empathy.....

    Take care lovely ...bless you and yours...Deirdre x xxx🌸

    • nicola51831
      nicola51831 deirdre._03652

      Posted

      I think 999 would just tell me I'm wasting time. Invisible illness and all. I'm going to contact the council next week and see if they can help. Thank you xx
    • deirdre._03652
      deirdre._03652 nicola51831

      Posted

      Hi Nicola my love....I would be very, very angry if they refused to attend a patient...that is what the 999 system was designed for....if they are offhand...then tell them.

      You cannot see heart disease...

      You cannot see diabetic...

      You cannot see cancer....

      You cannot see outwardly many, many illnesses that are quite often fatal.....you have EVERY RIGHT TO CALL THEM OUT...if they refuse...tell them you will report them and then make it public knowledge...please, please if it stays the same or God forbid !! Gets worse do NOT HESITATE TO CALL FOR THE HELP THAT YOU NEED AND ARE ENTITLED TOO....

      HUGE. Huge warm hugs to you my lovely...Deirdre ..God BLESS.. you will be in my THOUGHTS and PRAYERS...x xxx😊 😊

    • nicola51831
      nicola51831 deirdre._03652

      Posted

      Hi deride I did in the end call an ambulance after 4 convulsions and my head ready to explode. It took over an hour for them to get here and they dawdled my neighbour had to tell them to hurry the hell up. Then they drove so slowly to the hospital, when we got there,there was no room for me so I was laid in reception. After 30 mins they took me to a cubicle checked my sats and left me. I was then told it was a 5 hour wait to see the doctor by this point I was feeling better so I discharged myself. I am starting up with bupa next week. The nhs is slipping away it's a terrible service xx
  • LUBYLOO
    LUBYLOO nicola51831

    Posted

    Hi there , just because it cant be seen or is not a recognisable condition that 999 deal with , dont feel you would be wasting there time , thats what they are there for , its their job in life to help those "ILL" , and with Fibromyalgia you get chest pains ,( I know as thats what I am trying to cope with at the moment) so tell them that you have CHEST PAINS , they have a duty of care to attend even if it appears at a later date not as they had thought , at least you might get some relief and maybe just maybe someone can give you better help . I didnt think twice when I rang 999 after my fall , and after attending A&E 3 days before , my knee locked and I was stuck mid flight , so please if you are struggling more than usual  RING., take care , hope you have a easier couple of hours, we are all affected in different ways , going to bed with one pain and waking up to find its transported itself elsewhere as well is not how any of us envisaged our life would be , a constant round of pain , tablets, doctors ,hospitals , and still trying to maintain some sort of normality , but you WILL get through it . god is good x
    • nicola51831
      nicola51831 LUBYLOO

      Posted

      I'm getting good at pushing through the pain I avoid the stairs as much as possible and try to rest at every opportunity. Hardest times are meal times and night time as I'm in high demand. Right now children are playing out with friends and I just want to go for a hot bath but I live in a 3 storey house and the bathroom is on the top floor. So is it worth all that pain getting upstairs just to get 30 mins pain relief to then endure the pain on the way back down xx
    • LUBYLOO
      LUBYLOO nicola51831

      Posted

      Morning Nicola , just read your msg , hope you are ok after your trip in the ambulance , , strength is calculated in numbers and we are all here for you , we are what you call the walking wounded , but would still go that xxxtra distance to help fellow suffers as best we can in what ever way , be it advice , humourous comments , we help each other get thr the day , so I will be thinking of you today , hope its a better one ! xx
  • christine26761
    christine26761 nicola51831

    Posted

    Well said Nicola..if only we had transparent bodies and pain etc was red...perhaps then..? .you are very very strong Nicola, if only that could be seen but it won't...we all understand what you go through..we've either been there or are going there....be blessed, hope today is a better one for  you..gentle hugs.... have a lovely day..:-) xxx
    • nicola51831
      nicola51831 christine26761

      Posted

      Thanks Christine I actually ended up calling an ambulance as my head was that bad I had 4 convulsions also xx but I'm ok now I'm home and resting xx
    • christine26761
      christine26761 nicola51831

      Posted

      O' no Nicola, poor you, hope your ok now..that's terrible, I'm really feeling fir you...very gentle hugs to you from me...hope things improve really soon for you Nicola..I have no words..take it easy..really rest up and just be loved..be blessed..:-) xxx
  • bronwyn97278
    bronwyn97278 nicola51831

    Posted

    Hi Nicola;  I have read the other inputs and your replies......am so sorry that you had to go through soooo much.....

    ​I gather that this is one of your Regular days, and if so, how/what do you use to help you get through the other days?    I am hoping that you have a regular Rhuematologist and are able to take some regular medications for this, as no-one can exist like you are, and with a young family?......can you let us know what you take, and the quantities?   If the answer is No, then Please find one ASAP and start something  (it is a trial and error situation), but you do need some Real help......and as you said in one comment, if you need amendments to your home, maybe the local council/Social Worker/Occupational Therapist can assist you in some of these?..............am thinking of you....(and add that your description of your pain is a Good Description for others to use, when they feel that "no-one understands"..............Bron

    • nicola51831
      nicola51831 bronwyn97278

      Posted

      Hi bron I'm a till waiting for an appointment for the rheumatologist and no I cannot take any meds other than ibuprofen. Honestly I don't know how I get through the days. I use hot water bottle a lot and rest as much as possible even if I'm just sat on the sofa or at the kitchen table. I'm aching from head to toe right now but that's nothing compared to the pain I felt with my head yesterday. Feeling better without that. Xx
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