Why I Am So Angry

Recently I have been like a bear with a sore head, I am constantly angry, I can be fine one minute and then just explode th next, for what might seem to be over nothing.  The reason behind all this is simple I am a Mother.

When we have a child we make that promise that we will protect them, we will make things better, we will take away the pain, do whatever we need to do to make them happy.  This is my problem I can not do this, I am failing my Daughter daily and there is nothing I can do about it, and it is breaking my heart.

Since C became will with ME, I have realised that having a chronic illness is one of the most forgotten about illnesses, there is a lot of ignorance from the  medical professionals who  should be helping, there is a lot of ignorance all over, and most of the time you are left to struggle on day by day on your own with no support.

Our current daily situation is that C is bedbound as she has 24/7 migraine headaches (on top of the usual ME and Fibroymalgia symptoms that she suffers), I know what needs to be done, as she needs one of her medications increased slightly.  This is not as simple as you would think, as our GP surgery only a few Dr’s actually know how to treat ME or have an understanding of it, I have been to see our GP and told that children do not get this illness. So we need to speak to one of the GP’s who understands, which is when I will put a letter in as it is much easier than trying to get to speak to them in person.  Yesterday, I put another letter into our GP addressing this and so far all I have had is we can give you an appointment next Tuesday, I got quite emotional and now have to wait until later this afternoon to hopefully get the go ahead to increase her medication, which will help her with her head pain.  Surely she has suffered enough with being like this since the beginning of January

We see a great consultant, but when not seeing the consultant we are under the GP care, so they need to deal with anything that should arise. This is where we get the problem as the GP will not do anything without the Consultants authority, but you can not get hold of the Consultant to speak to the GP.

This is a common theme across the country, not just our personal circumstances.  Only yesterday I was reading about a child younger than C crying they have had enough.

Unlike a lot of other illnesses ME is one of those illnesses that you get no support and you have to knock down brick wall after brick wall to get anything.

C desperately needs counselling, we are told to go through our GP surgery to arrange this, CAHMS in the only thing they offer, but we have seen CAHMS before who have said they do not deal with ME and know nothing about it.  But there is no provision for children to have counselling.

My Daughter is 14 years old, she has no life anymore, she has lost contact with friends so has no social life, even if it is just chatting to her friends.

It is time that the professionals started to realise that this is an actual illness, and where symptoms vary from sufferer to sufferer, they are all linked in some way.  If my daughter or other child suffering with ME, had a different illness there would be so much support and understanding. Instead of being left to struggle alone.

My Daughters life at the moment is lying in a dark bedroom because her head is so bad, she is shuffling in her walking and unsteady on her feet.  She desperately wants to go to school, but just getting in the car and walking into the building for her tutor lesson, is too much for her.

I have tried to speak to our local MP and so has a friend of mine who also has a child that suffers with ME and lives in the same borough.  But again he is far too busy.

I am asking that you j take five minutes to read this post, and share to make others and hopefully the professionals aware that this is a problem and needs addressing, so that my Daughter and the many other children suffering do start to get the help and support they need.

To those of you who know me, when I put that smile on my face and say I am fine, look into my eyes, if I seem to be snappy or argumentative I am just letting things out.  If I look like I have been crying I have been.

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40 Comments

  1. Jacqui
    15/02/2018 / 1:59 pm

    My heart breaks for C . Well done on posting this we live a very similar life . It’s 2 pm and R has finally managed to get himself out of bed. I started waking him at 10.30 am hate hate hate this illness ! #nolife #millionsmissing

    • admin
      Author
      15/02/2018 / 3:38 pm

      I feel the same for you and R, it is so unfair and I swear I would not have coped as I have done from the start without your support and advice. I have not long had a breakdown on the phone to the Dr as they are not doing anything without the Consultants authority, but at least they are now trying to get hold of them. Glad you managed to get R up C is still in bed x

  2. 15/02/2018 / 2:01 pm

    So sorry to hear about your situation, wish I could give you a hug to make it all alright. I am sure you are doing the best you can for your daughter and she is trying her best to understand the pain and everything thats happening around her.

    • admin
      Author
      15/02/2018 / 3:35 pm

      She is so good and does understand, it is just the constant lack of care by professionals that makes it hard to live with day after day. I just want to do what a mother should and make it go away x

  3. 16/02/2018 / 8:28 am

    Oh dear God this is awful. You really need support don’t you and who could blame you for feeling this way. There is nothing worse than seeing a child in pain and not being able to help. The only thing I could suggest is private treatment if possible or putting out an APB on Twitter to see if, by chance, there are any ME specialists online who might advise x

    • admin
      Author
      16/02/2018 / 10:14 am

      Sadly there is none on line as others have tried before, our consultant is private also, but is so good (too good I suppose) he is just too busy. When we see him he is great but he is in such high demand. I am still waiting after numorous calls yesterday to our surgery and promise of phone calls back, and still nothing, even with one of the senior practice GP’s and still sat here at 8pm waiting on a call. I am at the stage now where it is Friday if nothing is done today then nothing will until Monday at the earliest and that is another 2 days of her being like this 🙁 x

  4. 16/02/2018 / 12:37 pm

    My heart goes out to you as I can’t even begin to imagine how tough it must be dealing with medical professionals who just don’t know how to help and treat your daughter x

    • admin
      Author
      18/02/2018 / 8:48 am

      We are under two hospitals, one they just haven’t bothered to phone back, the other one, after me ringing on Friday to chase things did ring the surgery Friday afternoon and are sending a letter in, no calls to me and no idea what they are doing and surgery will not do anything until they receive the letter. Monday I am going to be sat on the phone hopefully getting answers x

  5. 16/02/2018 / 1:51 pm

    It must be such a difficult time for you and your daughter. I was diagnosed with type 1diabetes at age 9 and I think my parents would relate a lot to your feelings of people not being able to deal with my condition and the support your child needs. You are doing the best you can and I know as a parent nothing matters more than protecting your child. It’s ok to be angry x

    • admin
      Author
      18/02/2018 / 8:46 am

      One of my friends Daughter who is the same age as C, was diagnosed with type 1 diabetes last year, and I was shocked at hearing how badly they had been treated.

  6. 16/02/2018 / 3:53 pm

    Seeing a child hurting is the most heartbreaking feeling in the world. I hope she is able to get help soon xxx

    • admin
      Author
      18/02/2018 / 8:45 am

      It is and I hate it, and we are now at the weekend and still trying to sort it out, but can’t do anything until Monday now x

  7. 17/02/2018 / 2:11 pm

    I’m so sorry to hear that C is now bedbound Samantha. I’m sure your all finding it extremely difficult, I’m sending lots of love xx

    • admin
      Author
      18/02/2018 / 8:44 am

      Thank you, it doesn’t need to be like this if we had the proper support she would be on the right medication, am still waiting to find out x

  8. 18/02/2018 / 12:22 pm

    Oh Honey. I am at a total loss of what to say. I was hoping the 2018 would a better and kinder year to C, but it isn’t proving to be the case.

    I am getting angry on your behalf…. It is all fair and well these professionals saying “Oh we don’t really deal with that or know anything about it” Open a book and learn about it then? Or Google could be your friend!!

    Stop refusing to help and do your job and get the help that people like C and her wonderful Mum need AND deserve!!!!

    Sending you love and hugs xxx

    • admin
      Author
      18/02/2018 / 5:59 pm

      I have done all my tears and anger, I need to speak to the consultants secretary tomorrow as I know a letter is going out to our GP surgery and i can at least find out if her meds have been increased or changed x

  9. Aimee Bradley
    18/02/2018 / 4:36 pm

    I’m so sorry Hun I feel for C suffering with fibromyalgia myself I have an understand just how debilitating it is. Much love to you both. Xxx

    • admin
      Author
      18/02/2018 / 5:58 pm

      Thank you and so sorry you also suffer, she is worse than she has been today, but I am hopeful I can speak to the consultants secretary tomorrow and find out if her meds have been increased and get her on them x

  10. 18/02/2018 / 8:59 pm

    I can totally see why you are angry having read that and I am surprised you have remained so calm!

    • admin
      Author
      19/02/2018 / 10:32 am

      I am not calm, this is normal battles for all of us with children with ME, so unfair 🙁 x

  11. Jem
    19/02/2018 / 6:57 am

    This is horrible and sorry that you are going through this. Big hugs to the both of you.

    • admin
      Author
      19/02/2018 / 10:31 am

      Thank you, finally have a sort of answer so hopefully this week will be a little easier x

  12. 19/02/2018 / 12:22 pm

    Wow. I can’t even imagine what you are going through. You and your daughter seem like strong, courageous women. I am so sorry to hear about this.

    • admin
      Author
      19/02/2018 / 1:40 pm

      Thank you, I am just doing what any Mum would do and fighting for my child x

  13. Jess
    19/02/2018 / 2:28 pm

    It’s bad enough not having the support you need from the GP without having to battle to get your daughter the mental health support she needs from a counsellor. I remember when I was younger it was so hard to get mental health support/see a therapist and since then budgets have been cut immensely so the waiting lists are bound to be bigger now. Have you tried looking for an online service. I know it would mean extra cost, but perhaps you could do some crowdfunding? Betterhelp and PlusGuidence have a directory where you can see what subjects each counsellor is experienced in and perhaps there would be someone with MS expertise? It might be worthwhile considering especially on days when C can’t leave the house because she could do the sessions over Skype. Just a thought. I know it doesn’t solve the GP/Consultant issue but it might provide a little bit of comfort for her.

    • admin
      Author
      19/02/2018 / 4:59 pm

      I have a friend who also has a son with the same condition, she has tried this route as well, but it seems if it is a child there is no one

  14. Hannah Denton
    20/02/2018 / 7:35 am

    Oh that’s so sad 🙁 I’m so sorry to hear. You’re doing a great job of being there for your daughter I’m sure, shes probably so happy to have you around her at the times she needs you most! It’s so frustrating you can’t get any support for something which is really effecting her life. Can you go private for a little while maybe? I know it may be costly but could help you both xx

    • admin
      Author
      20/02/2018 / 10:23 am

      My Daughter knows I fight her corner and I do anything I can to help her, but at times when you get no support from the professionals it can feel like I am failing her. Our consultant is one who people travel across the country to see and he is private but we are lucky to see him NHS, and he was the one who has finally come to our help x

  15. 20/02/2018 / 7:37 am

    I’m so sorry that you and your daughter have to go through life like this. Sometimes professionals don’t understand, even more so, I don’t think they care. I hope something comes your way that changes everything, especially your daughter’s perspective on life.

    • admin
      Author
      20/02/2018 / 10:19 am

      Thank you, it is just one of many things we have to face with this illness, and the sad thing is it is not just us, there are so many other children suffering across the country. It is about time things changed and the professionals were educated on this illness and worked together with the consultants and the patients x

  16. 20/02/2018 / 8:15 pm

    It is a very good narrative blog. I often feel that we tend to ignore the most important feature of our lives and you have just explained it so very well.

    • admin
      Author
      21/02/2018 / 11:27 am

      Thank you, I just try to let people know from an insiders view and how it really is living with a child or anyone with a chronic illness x

  17. 21/02/2018 / 9:56 am

    Reading this just breaks my heart. I have C and you in my prayers and I can totally understand your pain as a mother and I’m so sorry you have to go through this.

    • admin
      Author
      21/02/2018 / 11:26 am

      Thank you, it is heartbreaking and I hate this illness with a passion, I do hope we will get her to some stage of normal life again soon x

  18. 21/02/2018 / 10:13 am

    I am so sorry for what you are going through.. Some times we are faced with challenges we seems not to know how to handle.. i understand your frustrating, disappointment anger but you have to me strong for your daughter.. am optimistic that sooner than later you will get the support you need. stay blessed.

    • admin
      Author
      21/02/2018 / 11:24 am

      Thank you and I know things do sort themselves out, but this has been going on since beginning of January and it was heartbreaking watching her suffer so much on top of everything else, and to have to tell her day after day I still have not heard. I also know this is a common thing with this illness and the lack of support, there was even a debate in Parliment yesterday regarding this and it is time things changed. I am feeling a lot more positive x

  19. 22/02/2018 / 2:38 am

    I am so sorry your family is going through such a difficult time. I know your daughter is hurting and that is so hard on a mom.

    • admin
      Author
      22/02/2018 / 12:18 pm

      It is hard as a parent to watch your child suffer and not be able to help, times have changed when a quick rub of the knee or kiss to make it better or spoonful of calpol will help x

  20. RunningCharlotte
    25/02/2018 / 6:32 pm

    Worrying new studies have highlighted an increase in the number of children suffering from mental illness and Health Secretary, Jeremy Hunt, has highlighted that around half of all mental health illnesses start before the age of 14. Increasingly the discussion has centred on the need to focus on preventing mental health illnesses; mental health sufferers highlight that all too often provision in the NHS is concerned with curing the symptoms of the illness, rather than dealing with the root causes.

    • admin
      Author
      25/02/2018 / 6:47 pm

      Me and Fibromyalgia is not a mehtal illness it is caused from not recovering from a virus, but being ill and the lack of medical support has caused depression and anxiety which is affecting mental health. I totally agree with you, and in our area there is no provision for a childrens councellor or someone who understands the illness, we have CAHMS who we have seen before but they admitted they do not know how to help as do not know anything about the illness x

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