Hurting so much

[jfk71]

Hi this terrible illness is taking its toll finally. I have always mustered up the strength to keep on fighting but am way too tired for it now. Its not like its 'just' fibro - wevall of us seem to be bogged down with multiple illnesses and diagnoses. The lord shits on us from great heights in many ways it seems...apologies cos don't want to offend anyone with that sentence. Just had enough. I have battled with things for years through the birth of my two beautiful boys and the loss of another beautiful son. Through depression,anorexia and the fibromyalgia amongst diagnosed spine and hip disease,and I have come through the other side of it all. I just can't look after my boys anymore. I don't ever the energy and stamina it requires. I love them so very much and believe me when I say it rips my heart into a million pieces when I think of another woman playing at being mum. I didn't carry them inside my body ,feeling them grow,feeling every movement, getting to know the beginnings of their little personalities, just to not be able to keep watching, keep listening and learning and holding them whenever they want me to hold them because fibro decides I can't have any of it anymore. No matter how hard I fight the fibro steals the very fabric of all I have battled to muster up. Two days at the most I get,of feeling ok- and that's on a good week. My sons don't understand why mummy is sick again,why I can't have them stay. They try they really do...I always get the " I understand mammy " from my 10yr old boy,my 8 yr old has an explosive meltdown and is displaying emotional trauma as a result of the instability. So next week its off to court to have a care order put in place. As much ad it breaks me I won't object because its the boys I need to concentrate on,their needs and feelings,not my own. My ex,their father is fighting the process but he doesn't care from them very well at all so why- I am reckoning its EGO !! We had a looked after child review yesterday( they go to respite weekends and cis it's more than the maximum 72 days per yr they are deemed looked after children). The court case was brought up officially. It threw me, too real,way too real. Am now in throes of a huge fibro flare up,accompanied by anxiety and constant panic attacks, all without the joy of even an hours sleep. I don't know how to get through this and fight anymore.... Need some TLC xx

[Janet28]

On bless you jfk71 I'm so sorry you are in so much pain and suffering from all the dreadful symptoms you have, then to lose a child, I can't imagine what You went through.

You are going through a very difficult, stressful time with your kids & court and i think that's probably why your having this bad flare. Can you go to your gp & ask him to look at your medication or refer you to a pain clinic, they may get you some hydrotherapy to help you manage your pain. They can access more facilities, Palates, Accuppuncture etc. CBT (Talking therapy) etc. It sounds to me that you need all of that. It's a massive lifestyle change my friend & CBT helps you to accept & adjust with time.

If you don't mind me asking, what medication are you on ? Perhaps it can be tweaked or even changed. I'm not a doctor but I would say from experience, you need some help to get through this flare, especially as you are feeling so anxious. It may not even be all Fibro related, so best to go to GP & let him/her know exactly how you are feeling. They may possibly able to get some home help.

Peace, luv n light

Jan xx

[jfk71 in reply to Janet28]

Hi thanks for your reply. I am on no meds to specifically help with symptoms of fibro. I trialled amytriptyline which definitely helped me sleep better however I felt dreadful during the day like a hung over zombie ( not quite sure how a hung over zombie might feel mind you ) though imagine it would feel like I did. Given I was looking after my sons and trying to run a home,manage school runs,manage my depression and try to keep everything running g smoothly so as not to raise concerns with social services,I couldn't continue with that option so stopped taking it. I have tried gabapentin but was traumatised with the weight gain and given I also suffer from eating disorder I couldn't continue to take that either...though it never seemed to make any difference to the pain ! I have very little support...a cpn who I see monthly. The most support actually comes from my children's social worker. She tries so hard,but can't really do anything as she isn't my social worker. But she listens and she empathises and constantly reminds me that I am a wonderful mum,and that it stinks that its the fibro that is the prevailing factor in them being placed and she admires my strength+ allowing my children to go to another family so that they start to experience a full, fun childhood. Their dad is 72 and stands no chance of winning any court case let alone one to keep custody of our boys. The history of basic neglect and home conditions is extensive

[Janet28 in reply to jfk71]

Your welcome my friend ☺ I know what you mean with the amitriptyline, I was like that when I started taking them. I was sleeping through parties at the end of my bed lol. You do eventually get used to them though & they work best when taken early evening, I take mine @ 8 o'clock & they have worn off by the morning, so you don't get that zoned out feeling & can actually get out of bed.

I wonder what the dose was because it is usual to start with a low dose of 20mg & up them as & when needed, I was just thinking if your GP maybe gave you a higher dose because you were in so much pain & if you took them at 11pm, that would make you feel like that. I'm only saying that because I'm trying to think what could help you feel better & it may be worth trying them again.

We look after my friends daughter because she has severe bipolar & just to unable to look after her because the last 5 yrs she has been so unstable, her dad neglected her, so i know what that can be like, it's very upsetting.

We take her to see her regularly though & she talks to her all the time on the phone, she can't be on her own with her though. It must be so hard for you my friend but you can only do what you can do and you didn't ask to be disabled with fibro, you are a very strong lady to go through all of this & at least you do have the kids social worker to talk to. Can you not get a proper OT assessment done at home, you maybe able to access resources that will make your life a bit easier. Maybe you have looked into all these options already. Xx

[Jan810]

I'm so very sorry to hear of the heartache you are going through right now. There are no words I could offer that could ease your pain. Not only has fibro stolen your life, but it has now taken your 2 children away from you. It must be a tremendous amount of suffering to be dealing with. I don't think you should be dealing with this alone. I think it would be a good idea to get some counselling so that you do not fall into a deep spiral of pain. Could you see a g.p to get some medication for the anxiety and panic attacks in the meantime? It sounds like you do not need to be suffering any more than you already are, you are suffering enough. Please do not give up hope. You are doing what is best for your children in your eyes. I sincerely wish you all the best for now and the future ahead. Xx

[jfk71 in reply to Jan810]

Thank you 🌺

[TheAuthor]

Hi jfk71

I have read your post with so much pain and sorrow for what you are going through my friend. I truly wish I had the words to ease your burden and the power to make everything okay for you. Please, I implore you to talk to your doctor and ascertain if there is anything at all that they can do to help you?

Please do not be offended but I have pasted the telephone number for the Samaritans below, and please ring them if you need somebody to talk too:

The Samaritans UK - Telephone: 116 123 (UK)

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken x

[jfk71 in reply to TheAuthor]

Thank you ...and am not offended though will not probably call. Am not really able to actually verbalise what is happening inside my heart and mind with an absolute stranger. I can write down how I am feeling. I think its because I believe the sound of my voice somehow connects me with the person on a deeper level and it feels almost like I become an open book to them and exposes my vulnerabilities . That makes me incredibly uncomfortable as in the past I have found it enables people to judge,and turn on a person really quickly, some times before one has had the chance to even bkink an eye x

[TheAuthor in reply to jfk71]

Hi again jfk71

I can truly understand your reasoning on that my friend. Please take care of yourself and feel free to contact admin if you ever need to write down your feelings for somebody to read.

All my hopes and dreams for you

Ken x

[jfk71 in reply to TheAuthor]

Thany you for your very kind offer and words x

[TheAuthor in reply to jfk71]

Please take care my friend x

[jfk71 in reply to TheAuthor]

💔😢😢😢💧💧💧💧💧💧💧💧💧💧💧💧.....

[Angelesc]

I'm so sorry to hear of your struggle!

I too have an almost 9 yr little girl and relate to how difficult it is to seem like a victim or martyr but it's hard to hold it in.

I'm still in full time employment which pays well but its also very stressful and demanding and I've not told work the extend of my disability! I wonder how long I can on like this.

Some days all I want to do is hide under the covers and sleep but medication keeps me going and the day gets better before it gets worse again when the meds wear off bc they don't last how long they're supposed to! It's very odd! My daughter also has her own issues -diagnosed with mild autism & ADHD so it's extra hard managing her behaviours and pretending I'm functional. I don't have the issue of fighting her dad for custody bc he doesn't care how I manage as long as he can his own time. I get a break for few hrs through the week but she comes home to sleep except for Friday night where she stays with him until 8pm on Saturday.

I'm seeing a new specialist tomorrow and he told me last year he'll trial me on the ketamine drip in hospital for 5 days!

Have you tried any meds to help? I know it's hard to advocate for yourself, I find this the most challenging of all as well as seeing my family and friends not offering any practical help ever. I have a great neighbour and her kids come over and my daughter goes there too! The children are delightful so it's a great arrangement!

Have you got enough support?

Stay in touch!

[Lizzy-m]

Oh sweetheart this has torn my heart, please,please get the help you so desperately need. You are so brave putting your children's needs first, you must have the strength to come out the other side but at the moment you just cannot find it, Sending love xx