It's been a while but I'm back, and I've missed you all!

Hello Everyone. Firstly, let me say a big "thank you" to all of you who left me lovely messages in response to my last blog. They were very much appreciated.

Let me explain where I've been. My sister-in-law Leah had been misdiagnosed last year with IBS and period pains, which turned out to be a very rare form of cancer that had spread to various areas of her body. By the time she got the correct diagnosis, it was pretty much too late. She had several rounds of Chemo, and just before Christmas was told that the tumors were shrinking. Just a few weeks later, she began to deteriorate rapidly and the tumors had in fact spread to other parts of her body.

For a few weeks she was staying with Mum, set up in a hospital bed and the whole family taking care of her. When Burnie (my husband, her brother) wasn't working, we were spending all our time with her, so it felt like we were hardly ever home. Thank goodness for my very good friend Tina for looking after our animals, otherwise it would not have been possible for us to spend so much time with Leah.

After a while, waiting for nurses to bring pain relief to the house was just too much for Leah to cope with, so she moved into a hospice. Once again, the whole family spent as much time with her as possible, Mum hardly leaving her bedside. Finally, in the early hours of Saturday 10th March, Leah passed away peacefully in her sleep. She left behind her 11 year old autistic son Flyn. Her wish was for us to become his legal guardians, and so he is now living with us.

Her funeral on 20th March was a lovely service at a crematorium, followed by a wake where we were looked after extremely well. Flyn was of course very upset during the service but soon regained his composure along with his cousins, and was soon back to his usual self. He seems to have settled in with us pretty well and started a new school last Thursday, where he has already made a friend, despite a few teething problems.

While everything was going on with Leah, and I was busy helping to look after her and support the rest of the family, my FMS symptoms seemed to almost fade into the background. However, once things had calmed down and the stress had faded, boy did my symptoms come back with a vengeance! I had pain and tenderness where I hadn't had any before, and I was in bits. A trip to the doctor confirmed that it was all new symptoms of my FMS coming out as a result of the stress I'd been experiencing over the last few months. His advice - rest as much as possible. Easier said than done when you suddenly find yourself responsible for an 11 year old boy!

For 17 years, Burnie and I have only ever had to worry about ourselves, so you can imagine the enormous change to our lives. On telling Burnie that I was going back to bed the afternoon after seeing the doctor, because I was in so much pain and so tired, he announced that "these kind of days will have to be numbered now we have Flyn". Well, while I can appreciate that he'd been busy all day and I was leaving him to cook dinner (which I wasn't going to be eating), I was disturbed by the fact that he thinks I can just turn off my FMS whenever I feel like it. If that were the case, does he not think I'd have done that a long time ago?!!

It turned out that I had also picked up a nasty cold from my youngest niece, which really had me feeling even more under the weather than usual for a couple of days. I still have a chesty cough even now, but otherwise I'm just my usual FMS self. Then came Burnie's turn to get it. Well, it floored him for almost a week! Is it unkind for me to think to myself 'poetic justice'?!

Anyway, between the two of us, we seem to be managing fairly well having Flyn around. Of course it was a huge relief when he started school, just so we had some peace and quiet! Flyn never stops taking, even in his sleep!!

So now I'm taking the opportunity to reconnect with this community, who have been so supportive of me when I first joined, while Burnie enjoys a lay-in and I've seen Flyn off to school! I hope that you are all doing as well as can be expected and I look forward to catching up with you all again. Hopefully, I will be able to keep in regular contact from now on.

Big hugs to you all.

xxx

15 Replies

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  • Oh Kestrelflyer, I'm so sorry to hear about Leah but if she was in so much pain, I suppose we have to say it's good she has been released from that now as was my Mum in September last year.

    How wonderful are you for taking Flyn on, specially with your fibro. Hope Burnie learns to understand the condition a bit more x.

    Good luck with it all, I really admire you.

    Big hugs xxxx

  • so sorry to hear of your sister ,and what a brilliant lady you are ,

    big gentle hugs xxxxxx

  • Thank you Sue and Lynz, what lovely comments. You're so right Sue, we just wanted Leah's pain to stop and for her to be at peace. We kept being told she had so many days, then weeks, then back to days again, and she managed to push through every time frame they gave her. It was due to the fact that she was so young, only 35, and had a healthy strong heart. As much as it was upsetting to lose her, it was also a huge relief that she wasn't suffering any more. xx

  • Oh my God, only 35 years old. Poor girl. Shes not even had a life.... xxx

  • Hello Jules,

    thank you for your kind comments. 3 teenage children on top of your own children?! My goodness, forget what we're doing, that must have been such a challenge for you. You're amazing. I'm sure your sister must be so proud of her children and so grateful to you. xx

  • Hi kestrelflyer,

    I just want to send you a big hug. :)

    I am so sorry you have lost your sister in law, and i couldnt imagine what you are going through.

    We are always here for you, and i hope things settle down for you soon.

    love and hugs kel xxxx

  • Thank you Jazher. It's that kind of support that makes it all a little easier. xx

  • Hi Kestrel,

    Reading through your posting, my heart goes out to you and your family for the situation you've had to deal with. Cancer takes no prisoners, but 35 is no age at all. It is heartening to see you're part of a family which pulls together. I did chuckle at the "poetic justice" comment but am sad that your hubby thinks FMS can be flipped off. I imagine your adrenaline levels kept you going through the crisis, before your body finally called a "time out".

    Meanwhile, may I say that you are a star for taking on your nephew. He's a lucky fella and I bet he quietly loves you in his own way. Hope that his new school suits him and his routines are such that you are not collateral damage as you deal with the various challenges ahead.

    You are a brave woman, although I imagine you felt you had no choice. I'm new to the forum, and childless, but just wanted to wish you good luck, and send you some gentle hugs to be going on with.

    Sam x

  • Hey Sam. Thank you. Yes, in a way, we felt we had no choice but to take in Flyn. No-one else in the family would be able to raise him due to various reasons. We are fortunate enough to have a great circle of friends (who I will miss dreadfully when we move), but also support from the Armed Forces too, which is a blessing.

    I think you're right about my body finally saying enough is enough! I'm not doing too badly now, although I have spent several hours back in bed today while Flyn was at school.

    Returning gentle hugs. xx

  • So sorry about the loss of your sister-in-law, but she is now at rest and out of pain. You are two brill people taking on your nephew. I'm sure Leah knew how well her little boy would loved and cared for.

    Bless you both

    lol Susan xx

  • Hi Susan. Thanks for you comments.

    Leah gave me a birthday card back in Feb, in which she'd written "thank you for loving my boy". It still brings a lump to my throat even now.

    Flyn is very affectionate with me, but I think I'm just a substitute for the hugs and kisses he got from his Mum. xx

  • Hello Christine,

    It's lovely to hear from you again. I hope you are as well as can be expected. Thanks for your lovely supportive message.

    I think you're right about how we deal with our FM pain, depending on what else is going on in our lives. Unfortunately, I didn't pace myself yesterday with doing the housework and I'm suffering for it today! I only have myself to blame, but due to all the goings-on over the last few months, the housework had been somewhat neglected and I just wanted to give it a thorough clean, rather than the quick wiz over with the hoover treatment it have been getting.

    Flyn knew for a while that he would be living with us when his Mum passed away, but we always tried to focus on the positives like how we would do his bedroom and set up a playroom for him. Apart from a few teething problems at school, he seems to be settling down ok. His Nanny came for dinner last night and he was really please to see her. She is going to be taking him home with her for a few days next week for half-term, so he's looking forward to that. I think the break will do us all good, and Mum is feeling a bit lost in her house all alone now, so it'll be good company for her. Even though it hasn't been that long, I'm sure it will be strange not to have Flyn here!

    I am so grateful to everyone on this forum who has been so supportive and sympathetic to our situation, and so grateful that I found you all.

    Take care Christine.

    Hugs. xx

  • Thanks Chris.

    A very good friend of mine has an interesting take on life. She says that because Burnie and I are unable to have children of our own, this is His way of making us parents! I guess that's one way to turn a negative into a positive!

    Hugs. xx

  • Wow you have been through the wringer! I am so sorry that your family have gone through such a tradgedy. Thank goodness you were all able to support each other through this. Of course you did not time to come here, but we are here for you for when you need us.

    Maybe your husband Burnie saw you coping during this period of supporting others that he thought you could turn it off. My FM seemed to reduce during the time we waited for my step-father to pass on as he had Altheimers, Pneumonia and kidney failure all just before Christmas. I expected everything to flare up straight away but it did not happen until the funeral, but faded then for a week or so whilst I supported my mother.

    Last week I hurt my back and my painful hips seemed quieter. Maybe its because we are distracted with another kind of pain that we somehow manage?

    Anyway, good luck with Flynn, he sounds a handful but lovely. My grandson is mildly autistic and in a wonderful main stream school who are very supportive. They use smiley faces to help him judge how his behaviour is affecting others, and my daughter uses these at home. They do help, and although my grandson is 7, I work with 11 to 16 year old children and these faces can even be used for them!

    Hope it helps. I have probably just waffled as usual but do seek out other 'parents' who are going through the same things as you are, even if they don't have FM.

    Take care and soft hugs

  • Hi Sarah-Jane.

    Thanks for your lovely comments. It means so much to me that the people on this forum are so supportive. I feel like I have a whole group of friends that I just haven't met!

    I'm sorry to hear that you too lost someone important in your life. Isn't it amazing how we somehow cope with our FM while we go through these things? I do hope your Mum is coping with her loss.

    We have been given some information relating to a group of parents/carers and children in a similar situation to us, so we'll be making efforts soon to join their support group in our local area. I think it will be just as good for us as it will be for Flyn to mix with others with similar disabilities outside of his special needs school.

    We are still learning how to deal with Flyn and his condition, so tips like smiley faces are certainly appreciated, thank you!

    Take care and returning hugs. x

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