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Struggling :-(

Discussion in 'General ME/CFS Discussion' started by Jemima37, May 15, 2017.

  1. Jemima37

    Jemima37 Senior Member

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    Sorry to post yet again I just needed to let all of this out, and this is a safe place to do so I think. I apologise if this gets long and I don't expect anyone to have the answers. I have wanted to post this all weekend but not let myself because I may start crying and never stop.

    Basically in 2011 my brother attacked my husband, unprovoked. He has serious mental health issues that make him paranoid and violent. Police involved but we didn't press charges as my mother threatened to cut me and my children off if I did. A year on my grandmother passed suddenly, she was more of a mother to me. I was broken. Then 3 months later after another year of abuse from my brother he chased me in my car and told my mum he was going to kill me. I ran into a police station where he assaulted me in the reception area and he was arrested. Again I didn't press charges, despite death threats all over his social media. I was again told by my mother I was guilty for him being arrested because I shouldn't have run into a police station for help :-( My sisters and mother cut me off as I refused that time to forgive.

    For 2 years after I was sent abusive threatening messages from my sister, demanding i forgave him but I refused and in the end I had to cut my sisters off completely as they kept contacting me demanding to see my children and hurling abuse at me. My mother drifted further and futher away from seeing my children which was something I did still allow.

    As a result I was diagnosed with PTSD, severe anxiety/panic and I was agoraphobic for a year in 2013. I overcame it with medication and therapy. In 2014 life was good, I was out living and happy. Able to drive again alone, go to shops alone with some anxiety, go to all my appointments again as long as hubby was sat beside me. I was doing amazing.

    In summer 2015 I started feeling fatigued, I assumed it was due to the medication I take for anxiety and sleep, I take 15mg of Mirtazapine which is an anti depressant. I saw my GP and he didn't think it could be after 18 months on the drug. He ran some bloods and my thyroid was almost borderline. My fatigue suddenly worsened that winter after my son was seriously bullied in school to the point he planned his own death. He told his school therapist who rung me and told me my son wanted to die. I felt my life broke that day. I still cry now talking about it. Our GP took it very seriously and referred him to CAMHS who offered no support and told me as I'd experienced anxiety I would be the best person to help him!! I had 3 months taking care of a very unwell son who was terrified of school and in a constant state of panic attacks.

    During those 3 months I broke, The room was dizzy, I couldn't walk down the street without feeling the ground beneath me tipping like I was walking on a boat. I became bedbound for weeks and could barely walk I felt so weak, shaky... My GP was called out and he diagnosed stress and another trauma. He saw me 3 times during those 3 months and ran blood tests which all came back ok. He said it was all stress and advised therapy again. Which I did.

    My son finally got some support from CAMHS after I begged them for help and he is now the most confident young man. He is 13 now, happy, and loving school. His bullies now won't dare look at him considering he is 5ft 10! haha! I am so proud of him. I gave him therapy myself in those 3 months and he says I taught him more about handling anxiety and bullies than CAMHS did, which made it all worth all the hell we had been through.

    Ever since late 2015 though I haven't been well at all. In February last year I noticed after trips out to the beach half an hour away or if I over did housework I'd crash. I'd end up bed ridden for 2 days after with dizziness, weak burning legs, serious fatigue and nausea. I saw my GP who said it was still stress, anxiety and depression but also said I was subclinical hypothyroid. I sought a second opinion and that GP looked over all my bloods and said I had CFS and in his words 'we don't know what to do with people like you with clear bloods and chronic fatigue'. Nice! I stuck with the other GP because at least he was admitting my thyroid was failing.

    In May 2016 I was put on thyroxine after my TSH hit 9.28 (0.24-4.2) and my FT4 was 14 (12-22). Antibodies were negative. I was put on thyroxine 25mg and I am now up to 75mg and due a test soon.

    MY fatigue never really got much better, I would crash after anything social or a day out or even housework. I noticed after every time my mum would visit the children I'd be so ill in bed for days. It was horrible and scary. I called my GP out again in the late summer and he still said mood and anxiety was causing my crashes and daily fatigue. I felt so frustrated and wanted a diagnosis once and for all. He ran a list of bloods as long as my arm at the end of October last year. FBC, blood film, B12, Folate, Ferritin, HBA1C, Cholesterol, Liver and Kidney function, nuclear antibodies, glandular fever......... everything was fine but my random glucose was up a little which he made me repeat in the form of another HBA1C in March which was fine at 34. My sodium was 129 (133-145) and potassium 3.4 (should be 3.5 and above). He was only concenred about the sodium but on the day I'd drunk so much camomile tea I was peeing for Britain so he thinks that lowered my electrolytes on the day. He had told me these bloods were definitiive and he would diagnosed CFS but again never did.

    December 2015 I suddenly felt very unwell, serious anxiety out of the blue and very low mood. Most winters this hits because of bad memories of family turning up screaming at me for 2 Christmas Eve's after the attack with my brother. I seem to get really anxious during December as i fear my family insisting on visiting to see the kids and my sister did contact demanding I let her see them. It triggered bad anxiety and for 6 weeks I felt so ill with physical panic and nausea, very unlike me. Again I could barely walk due to weak legs and constant fatigue.

    Since then my social anxiety got worse. All of last year I was just housebound, noone came to see me. My mother knew how ill I was and refused to love and support me. She would visit every 2 months to see the children, see me in a crash, let my step dad call me lazy and saying there was nothing wrong with me.... and then leave and not call to check I was ok or did I need support. I would crash for days after their visits, I'd sit and smile sweetly through the visits that made me feel anxious as hell. I just felt abandoned all over again and I don't mean to sound a victim here. I basically only had hubby and my 3 children, that was it and hubby had started a new job an hour away so never took a day off to help me because he couldn't. I was coping alone, driving the children to school, house work and cooking, it was exhausting.

    During that time I became so socially anxious that even when the postman knocked the door it would trigger severe panic. This started after one day I stood up off my bed to go and answer the door to the postman and my vision went all black and heart was pounding. Ever since I just can't answer the door when he knocks, he ends up taking the parcels back with him :-( I am ashamed to admit that. I could still answer the door with mild anxiety until about December last year but now I can't, everytime I try my vision starts to go black with the panic and I shake like crazy so I just don't put myself through it now. I get the same reaction if anyone visits, yesterday my sister out of the blue turned up. I was sat in the garden and I heard the gate open behind me, it was her and I said hello and took my dog inside before she ran out the gate.. I then went all black in vision and shaky as hell. I had to go and lie down. My husband talked to her, she had come to colllect my son to play badminton with his cousin (I had no idea my son had arranged for her to collect him, I thought they were just meeting there). I didn't go back outside and after worried what she thought of me. My family talk about me and my mum has told me my sisters say they feel sorry for my children because I am ill and in my sisters words 'The kids are stuck in'. It breaks my heart my family are so toxic and horrible about me. I have been so ill and they've not offered a days support or even asked how I am yet they judge me not having a clue of what I am going through plus trying to give my children the best life possible.

    Anyway, yesterday made me realise just how bad my social anxiety is. Since Christmas I can't have any visitors, I have even stopped my mums visits as I can't handle the crashes afterwards. I told her she could see the children at her house or a neutral place and my husband would bring them to meet her. I was honest and said I had to focus on my recovery without any added emotional pain. She was upset i had decided this but she admitted she had let me down and cant change. She is with my sister daily, sees her grandchildren daily and can't make time for me and I am the black sheep now so my sister won't allow my mum to see me unless she is with her. It's awful and that is why I know I am better off away from them, my husband wants them nowhere near me and I have even been told by my GP that I'd be mad to ever let them back in my life lol! I had a very abusive childhood and was more the mother role to my siblings. My life with them was always hard and they are very unstable people. People often ask am I sure I am related to them loL!

    I've felt more unwell since Decembers anxiety month, the anxiety is much better physically. I spoke to my GP in January and he suddenly said he was concerned about how fatigued i was, after a year of me asking him to diagnose me and him brushing it off as anxiety! He said he had been thinking and he was worried it was something more sinister and he wanted to come and see me. In a total panic I said no. I found his visits hard last year but I could do them with hubby with me, and that was even in my house. I have found appointments tough after so many blood tests in 2015 when ill with fatigue and one day I was so ill with fatigue but dragged up there for another test, kept waiting 45 minutes then had a serious panic attack in the nurses room, made a fool of myself and since then I find blood tests terrifying and can't go to the clinic and that's why my GP says he will visit me.

    After the talk in January I became so anxious about my health. I have felt worse this year with my fatigue, maybe worry has been a cause but I have just felt more tired. Daily I feel such heavy fatigue all over, I explain it like my body is heavy and shutting down and I am dragging it around all day. My head is heavy and eyes woozy tired (some days the eyes don't feel that tired and it's more the body drained), some days my legs feel so so weak and the thighs feel they're burning they're that weak and I struggle to walk. I feel my BP dips on standing and my heart races on standing and walking about and I just can't wait to sit back down. I can't seem to stand for long periods not just because I am tired but because I feel woozy and like i am sinking if stood on the spot or even walking I just feel too weak and woozy. I sometimes feel faint if stood doing my hair looking in the mirror. I have bad light sensitivity some days then others not at all. Then the crashes which can hit after anything emotional//stressful and exertion. The crashes last a day or 2 to pass but then I can be left for weeks with low energy. This year I have had far more bad day than good and lately in a week I am lucky to have 1 day where my fatigue and symptoms above are a 6/10. To me that's me feeling well, a crash is a 10 and seriously bad fatigue day a 9/10. So a 6 is amazing and stupidly I always over do it on those days.

    I am worried why I feel much worse this year. Today I have woken feeling like I have never slept and I have felt bad all weekend and hubby had to take over. So so fatigued and weak it's horrible. I even dread walking to the bathroom. I then add fear and anxiety about what is wrong with me.

    After my GP rang for the second time in January I agreed to re test my bloods so I used MEdicheck who I use to test the thyroid as I have to do it early morning, fasted so Thyroid UK recommended companies they use that do finger prick home testing, accredited labs that the NHS and private labs use. I saw they did a full blood count and as my GP wanted that repeating, electrolytes and HBA1C again I agreed I'd just pay and have it done private when I next did my thyroid. So in March I did the thyroid and requested the following tests too. I didn't mind paying because due to my anxiety I couldn't face my GP coming to the house and putting me through the trauma of more tests with him as I find blood tests terrifying now. I had to fill 2 tubes. All came back good other than on the FBC my white cells were slightly out, they were my Neutrophils were 1.6 (range 2-7) and Lymphocytes were 3.98 (3.65 is max they should be in range). Liver was 0.5 over on the AST and ALT. Sodium was 134 (range 135-145) HCT on red cells was 45.1 and max is 45 so barely over but flagged up.

    My GP saw the results and asked me to re test the FBC in 3 weeks. I did them after 5 weeks as I had awful acne breaking out those 2 months and wanted it to clear before I re tested. I thought the spots were improving so on a crash week I repeated the FBC and it came back as my Neiuutrophils were 1.79 so they had improved but the lymphocytes had increased to 4.45. I had a call with my GP and he assured me it wasn't anything sinsister at those levels as my total white cells were fine at 6.8. He has referred me to a Haemotologist for his opinion, I cried and said with how bad my agoraphobia and social anxiety is I couldn't go into a hospital appointment. My GP said its unlikely he will want to see me and he's just written to him for an opinion on my blood results.

    He wants me to repeat the sodium but my hubby and friend says there is no need 0.1 under range and my GP is just asking me to do test after test and still doesn't diagnose after 18 months. One week it's CFS and then he says stress or anxiety. Then he says it's not normal and he is worried which has since triggered my anxiety every day. Today walking around I feel so heavy and fatigued I just need to keep sitting down and on walking I get anxious an cry because I feel so unwell it makes me worry what is wrong with me. At least last year he was saying it was anxiety or CFS and I tried to believe that, or I even blamed the thyroid even though he never did.

    I worry because my husband says lets call the GP out, let him do another load of blood tests and we will get through it together. The old Julie before this last winter would have as I'd do anything to make sure I didn't ever die and leave my children but since late last year I suddenly am too scared and have become so socially anxious I can't do appointments or have people to visit so a GP visit to my house is even terrifying. I am seeing a therapist via Skype and she is lovely and says it's all due to isolation and being so unwell, and if I wasn't this poorly every day I'd not be agoraphobic and she is right. It's purely due to how ill I am and I just panic being around people like this :-( My therapist also has a daughter with ME and she says I fit the bill to a T and my GP has no clue what he is doing constantly wanted to diagnosed diabetes or some other disease instead of looking at the results I've got and seeing that I don't have any of them. He one minute says CFS or mood, and the next he is saying he is worried, it's made me an anxious wreck. I said to my husband I am worried what if it's sinister now my white cells are changing, what if I am slowly dying and it's been missed this last year him just blaming mood and anxiety and now things are much worse.My GP this year has made me an anxious mess wanting me to repeat so many tests and still not telling me why I feel so unwell.

    Have I neglected myself? have i let anxiety stop me getting proper help? My hubby says not at all as I had my GP here 5 times last year trying to get answers, did all the bloods he asked for, took the thyroid medication, have had 4 phone calls this year trying to get answers and done the bloods he's wanted even if we had to pay. He says I haven't neglected myself at all. Now I am just feeling so poorly physically I am terrified I have had something missed :-( I hate that I now have this awful social anxiety and can't even do appointments :-( I feel a complete freak.

    I do my best for my children, they are such happy souls, everyone tells me they're a credit to us. They are 15, 14 and 11. Wonderful children who are my life. I do my best and have still done holidays the last few years but this year have had to cancel it as I just don't feel with this level of fatigue I can go. I am missing out recently on any school concerts, I managed the Christmas concert but crashed for days after. I know I am going to miss my daughters leavers service in July when she leaves primary if my health doesn't improve adn I feel the worst mother ever as I made it to my boys even after I was attacked. I hate that being physically ill has caused this level of agoraphobia. Day to day at home I am fine, no real physical anxiety or panic and always happy and chatty with my children and husband, we always laugh together but inside i feel terrible, scared and worried what is wrong an once the children are in school i often just sit and have a huge cry. I long for the days I feel some relief from fatigue at this level adn those days I reassure myself it can't be something sinister to have the odd good days where it's a 6/10.

    Sorry this got so so long. I am worried what is going on, I am worried my GP is wrong and it was never CFS (that 2 suspected) and now results out of range i am a wreck waiting for the hospital to contact me. It's been 3 weeks since my GP wrote to Haemotology for advice. I am worried I am never going to be able to socialise again or open the door to the postman. i just wish this fatigue and heavy body would lift, I know then I'd be so much better and could work on any residue anxiety and agoraphobia. I know it's the root of all of this :-( I feel a terrible wife and mother like this. I had 2 amazing weeks in early April and I felt well, yes I over did things going out daily, 9000 steps a day, talking daily to friends on the phone and so happy then WHAM ever since that school holidays I feel so so ill daily and it's felt like one long crash the last 4 weeks.

    Sorry this got so long. I really am and if any of you got this far then WOW you deserve a medal and a chocolate biscuit ;-)

    Not sure anyone can say anything but I just needed to let this out and have a cry because I feel alone and worried am I the only one who suffers with agoraphobia and social anxiety because of this. Do Ii sound like a complete idiot because I can't attend appointments or even have my GP to my house the last few months? :-(

    Sorry for repeating anything too, I really am sorry this is war and peace about my life.

    Julie
     
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  2. mirshine

    mirshine Senior Member

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    @Jemima37 I am so so.sorry that you ha e had to go through such trauma. Especially from family.

    This absolutely is a safe place to vent.

    I have no advice, but I send hugs :hug:
     
  3. Jemima37

    Jemima37 Senior Member

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    The hugs are much appreciated. Thank you so much xxx
     
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  4. hellytheelephant

    hellytheelephant Senior Member

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    @Jemima37 - no, you don't sound like an idiot at all. You sound like someone dealing with physical health problems on top of your anxiety. That is a heavy load!

    I don't have The Answers,but I would say go gently and take it one day at a time....or on a rough day- just go hour by hour. This is a safe place for you

    :hug::hug::hug::hug:
     
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  5. Crux

    Crux Senior Member

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    I hope you've brought up the sodium and potassium. When they are low, that can cause anxiety.

    Thinking of you...
     
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  6. Jemima37

    Jemima37 Senior Member

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    My GP repeated my sodium and 9 days later it was 138 when I had the 129 result. Recently the 134 result he hasn't repeated. I was told I didn't have to repeat the potassium as it was 0.1 under and on the day I'd had alot of herbal tea and urinated a lot.

    Thank you

    Julie
     
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  7. Jemima37

    Jemima37 Senior Member

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    Thank you for your kind words, they mean so much to me :)
     
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  8. Hilary

    Hilary Senior Member

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    Hi @Jemima37 - it sounds as though you've been through a horrendous time and as hellytheelephant says, you're not an idiot. I don't have the answers either, but I do hope you're finding therapy helpful and it's useful that the therapist has some knowledge and understanding of ME. This is also a safe place to come to and there are many kind and knowledgeable people on PR. I'm not good at the moment so can't post much but I'm thinking of you and sending hugs:hug::hug:
     
  9. Dainty

    Dainty Senior Member

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    Offering hugs and support. :hug:
     
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  10. Jemima37

    Jemima37 Senior Member

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    Thank you for your kind reply. I appreciate it. Xx
     
  11. Jemima37

    Jemima37 Senior Member

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    Thank you Dainty xx
     
  12. belize44

    belize44 Senior Member

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    First of all, I am so glad that you could come and post here and let it all out! Please don't feel the need to apologize for venting! I have toxic family members and I am pretty much familiar with what you are going through. It sucks major, when your own blood relatives cannot respond in a productive and supportive way. Please be assured that we care and you have no limit on venting here!:)

    Most of us have experienced lab happy docs who are only good at running tests but not using their noggins as well. It sounds like you are having a lot of stress with doctors too, to which I can relate well as I am going through this too. I liked the part about your son going back to school taller and more confident; you must be an amazing mom!
     
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  13. Jemima37

    Jemima37 Senior Member

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    Aww thank you so much for your kind words I really appreciate it. Knowing I can talk here and have people who understand means everything to me as I've never felt so alone the last year.

    I am very proud of my son and thank you for your kind comment. My children are my world and I'd do anything for them to be happy and well. I just wish that I could motivate myself to get my health sorted but I did all of last year and my gp was just a nightmare blaming anxiety or depression yet the other gp said it sounded like cfs away. I've just never had anything officially diagnosed I just keep being told i need blood test after blood test and being worried sick about results, and I still don't get answers so every day feeling so drained and weak I panic and worry all day what's wrong with me.

    I've cooked dinner tonight feeling terrible and I'm now lying on my bed changes in my pjs fit for nothing.

    Thanks again
    Julie
     
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