The strength to keep on fighting: Hello everyone, It... - NRAS

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The strength to keep on fighting

21 Replies

Hello everyone,

It has been a few days not since my last blog because, to be honest, I had a bit of a ‘melt down’ and needed to get a hold of myself.

I wasn’t sure exactly what triggered it but think I have a better idea now. The news that my ex-husband had finally drunk himself to death left me very sad and angry - partly for him but mostly for our children. They had more or less cut themselves off from him but still felt very emotionally mixed up about their relationship. We split up 23 years ago when my daughter was nearly two and they rarely saw him more than once a year so have very few memories to attach to him as a parent.

My son did an emergency dash up to Hertfordshire to see him before he died but his father was pretty much unconscious by the time he got there. I think that what got to me most of all though was my inability to protect my children from hurt and to be strong enough to be by their side. Ok, they are 26 and 24 years old now and I know that they are young adults who need to learn how to deal with the knocks in life but I also know that they carry the turmoil of greater than average family difficulties because of RA.

When the kids went to school, I returned to education to try to better our lot in life and create a secure income. I completed a degree in psychology and was going to continue with teacher training until I was finally diagnosed with RA after years of being told that my aches and pains were stress.

The first years were very, very difficult indeed (we are talking about 13 years ago now) and I know that the children found it hard to see me in such pain and must have felt very insecure about how I was going to look after them. With the help of steroids, however, and some gritty determination I completed my teacher training 3 years later at the local school rather than through college.

For a while it was fantastic. I loved my job, I had an ok income, I could afford a camping holiday or two but gradually this flaming disease caught up with me again. I put on loads of weight from the steroids, I was exhausted, I had two teenagers and an elderly mother to look after and I had spinal stenosis. The job had to go and my dear mother had to go to my siblings for care.

Return to poverty and pain. My children had. by this time, both developed their own issues (which I won’t go into here but which we are still working through). I told myself that I was never going to let them be my carer and yet, in retrospect, I distinctly remember my son sitting next to me in the car and changing gear for me when I told him. I also remember going to him in tears because I had spent 15 minutes trying to put a dress on only to find that it was on back to front. He was so kind and gentle and helped me turn it around but he was only 12 and I should have been looking after him and giving him the security to go out in life with courage and confidence.

Now I feel back there in the incompetent mother space. I’ve had hideous pain from sciatica for a while now and can’t accompany my children on this difficult journey to their father’s funeral.

I cried, oh my goodness, how I cried and cried feeling a failure, feeling useless, feeling that I had let my children down, feeling a burden, fat, ugly, and crippled and 101 other negative things. Did it help my children? No of course not, it shocked them, it hurt them and it annoyed them. This actually wasn’t supposed to be about me.

So…….what next? I have a choice here. It doesn’t have to be like this. I am a depressive, I know that, it comes with the disease but I don’t have to let it take everything from me. Somewhere in all of us there is the will to fight, the need to improve our lot. I know this because this is why we are on this site, we are reaching out to each other rather than sitting waiting for someone to turn up at our doors. We may not know how to make the big changes but there are little things we can do each day to mark off as an achievement rather than a failure.

I fell of my exercise and diet routine for a while but this is one thing I can do. I can find the strength to carry on. To lessen the load on these joints and to get out of the house and meet other people. I can show my children that I am strong in spirit if not in body and that is so, so much more important than anything else. It is not the success that counts, it is having the drive and the courage to keep getting back up after a fall. I know I can do this and I write it here as a tribute to you all as you are the ones who understand. xx

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21 Replies

Dear Creaky that was a very heartfelt plea for support so I offer you just that and a big cyber hug. Tilda xx

in reply to

Thank you Tilda. I'm over this particular meltdown now and looking forward to resuming exercise and diet! Oh how fickle I am.

My ankle op is on 12th Sept. I'm not sure yet what is going to happen regarding after-care as I will be unable to weight bear for at least 6 weeks and the knee on my other leg is not strong enough for me to hop!! I'm hoping that I will be able to convalesce at the local cottage hospital for a couple of weeks and then stay with my sister.

elsa123 profile image
elsa123

That is such a moving tale of your life and struggle.

My Dad died from alcoholism.

He was divorced from my Mum, so it was left to me to deal with him and all that comes with yet another terrible disease.

I never stopped loving him, and maybe your kids felt the same way.

It's amazing how kids just keep loving their parents no matter what.

Hugs to you and keep on fighting, your story has given me lots to think about, and hopefully, when tomorrow comes, I will gain some of the strength that you have found to keep on fighting. X

in reply to elsa123

I'm so sorry to hear about your dad. I don't think you every really get over having to deal with something like that. How are you feeling now? It is amazing how we manage to pick ourselves up from the lowest point ever. Keep in touch. x

Dotty7 profile image
Dotty7

Well done you for articulating your thoughts so well. Have the confidence to pick yourself up and keep on achieving your goals, but don't be too hard on yourself about the things you feel have gone wrong. We all do the best we can every day, and need to treat ourselves with the same compassion we would give to friends and even to strangers.

Dotty x

in reply to Dotty7

Thank you Dotty. xx

thekeys46 profile image
thekeys46

Big hug for you Creaky ((((((((((((((((((((((((((xxxx))))))))))))))))))))))))))

in reply to thekeys46

xxxx

watson3 profile image
watson3

Much love and special thoughts are with you today and always. X

in reply to watson3

Thank you xxx

asasmum profile image
asasmum

Creaky you really gave me food for thought. Like Dotty says you really have put your heartfelt thoughts down so well. You have achieved so much despite the awful hand you have been dealt. You need to feel so proud of yourself and your kids to have come all this way. How brilliant to achieve such qualifications and get the chance to practice too. We all have such stories to tell and it is great to hear yours. Keep your chin up as you have given lots of us a helping hand in keeping ours up too. Thank you Asa's mum xx

in reply to asasmum

Thank you Asa's mum. I've bounced back now - just like one of those toys you get in budgie cages!!

You are not too far away from me. If you are ever over this way perhaps we could have a coffee together. xx

sylvi profile image
sylvi

Creaky, What can i say that others haven't said,i will have a go. For a start i know what your children are feeling regarding their dad dying of alcoholism. My mum was a alcoholic. After my dad died in december 1999,my mum gave up the ghost as well. She fell down the stairs on the 15th august and was three times over the limit for driving. It took me two years to come to terms with her dying. The one thing i did learn was that nothing could have changed the way she died. It was her time to go and that was it. I predicted when she was and how she was going to die. I was only out on my prediction by ten days and i had to live with that as well.

Like what has been said earlier your children still love you regardless of your illness. They understand that you wouldn't be able to go to his funeral,may i sugeest that you get a candle and tell them that on the day of the funeral you will light it for them to let them know that though your not there in body you will be with them in spirit. Also i find lighting a candle soothes the nerves and has a calming effect. LOve sylvi.xx

in reply to sylvi

Thank you Sylvi. The funeral is today and my son is making his way there now. My lovely sister who lives up there is also going to the funeral as my representative. (just like the queen). I feel so much better now and am counting my blessings. xx

caggy profile image
caggy

Dear Creaky, My thoughts are with you, I don't know that pain, So I will not try and say anything, all I can say is you are such a lovely lady helping others, you have really encouraged me. So I'm sending you a heartfelt hug and pray that there will be a better brighter day soon.

Love Carol

in reply to caggy

Much better now Carol. Bounced up again, had a lovely lunch with a friend at our local beach - freshly grilled sardines and salad. I'm so lucky to live in such a beautiful place.

helixhelix profile image
helixhelix

Dead impressed. Getting up and starting again is the hardest thing, so well done. Can't tell you how many times I've fallen off whichever wagon I was trying to steer at that particular time. So wish I could send a big pot of magic strength potion via the Internet to help you on your way. Take care. Pollyx

in reply to helixhelix

Thanks Polly - magic strength potion mysteriously received! xx

Gina_K profile image
Gina_K

Just reading your blog, and have to say well done, rearing children on your own and yes the issues raised must have all been awful for you. However, you are fabulous to keep going, and bereavement in any form is difficult, try and look forward as much as you can, I doubt you will ever be a 'burden' I am sure your kids will be only too happy to help you if required.

stay strong and let time pass, Gina.

in reply to Gina_K

Thanks Gina. One good thing about having the kids grow up with it is that their general disdain and lack of respect give us a lot of laughs. They mock me mercilessly (in a good way) and it helps you to find the funny side of the situation.x

Creaky you are beating yourself up something shocking but you have dealt with alot. You were very strong to leave your husband in the first place and to reenter education when you have ra. You seem to have the capability to pick yourself up when things are really tough so i am sure you will do so again. All the best Creaky

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