Hello everyone
So about me, well I’m 37 (this April) I’ve been a carer for 13 years, looking after my 15 year old who has Autism and ADHD, I also look after my partner who had a massive stroke 11 years ago (2 weeks after giving birth to our youngest). I also have a daughter who is 11 and takes after myself, she’s my pride and joy though I try and avoid putting care responsibilities on her. I also care for my mother from time to time who has been through the works with Cancer and spine problems.
I always take my caring role seriously and have always put everyone else before myself, between caring for two at home, raising our daughter and doing the odd job for mother it’s a full time job with no break or rest, I have care packages for both though neither line up and were rather small until a certain incident (I will go into this a bit further down) so respite didn’t exist, I did this for 12 years, unfortunately I didn’t collapse, I completely broke and now I’m at my absolute worse.
I should go into my family before myself, my son is a affectionate loving boy of 15, he does not talk and is incontinent, his energy levels are through the roof and has a difficult time managing his emotions which easily turns into a violent outburst either towards himself or others. He absconds so needs to supervised at all times, he needs help with his personal care and attends a specialist school.
My Partner, we’ve been together for 22 years, we met at college and has the same dark sense of humour that I have, we both enjoy watching anime together, she had a stroke 10 years ago after having given birth to our daughter, I could never forgive the hospital for it as she was left for 3 days undiagnosed, and was ignored on the first day when I mentioned that I believed it was from a blood clot. She was then rushed to another hospital for surgery, she was in hospital for a year going through rehab and I was with her every step of the way, attending sessions with her with baby in arm and 3 year old son who was starting nursery.
My mother is my adoptive mother, we joke to this day about how similar we are despite not being blood related, she can be very tough and I owe a lot to her so I do what I can, she has spine issues that was corrected by surgery and suffers from a auto-immune disease .
My daughter doesn’t have any conditions, she is a young carer who is incredibly kind and loving to all and in turn is loved by everyone she meets, she works hard and wants to be a Vet some day so I try to keep her away from the caring role so she can focus on herself.
Now that’s over, the rest get’s very emotional and deep, it may not be for everyone so feel free to skip the remaining.
Four years ago I started to have a pain in my leg that wouldn’t go away, it wasn’t awful, just a constant ache so I thought nothing of it and continued, the pain got worse so I spoke to the doctor who had a Xray done, no problems, perhaps I’m just over doing it? Prescribed Naproxen and co-codamol and continued on as I did. The pain was now spreading and now felt like have a red hot knife being stabbed and cut down my entire leg! It was debilitating it was so bad, there were nights where I cried myself to sleep, if I was lucky enough to get any.
At this point I had an MRI down and it turned out that I had two lots of nerve compression on the sciatic nerve (the largest nerve going from back to feet), I was referred to a specialist, we tried a epidural steroid spine injection, these are pretty safe to do and can last years, for me though it helped for two weeks, the GP was trying various pain killers and other medications that help with nerve pain, mostly consisting of anti depressants, anti psychosis and other such medications. During this time I continued as I did normally, looking after everyone, I did ask for the packages to be increased but was unfortunately ignored. Eventually I had to have surgery, they’ve taken a part from four spine discs to free up the nerves, this meant bed rest at home for 6 weeks. The care packages did increase to cover the period I had to recover, unfortunately the package wasn’t working, Adult’s was giving domestic help where the cleaner couldn’t carry any bags of rubbish out as it was “too heavy” or change the top bunk bed sheet as it was “too scary”, Children’s side had carer’s just sitting there on their phone all day, doing nothing with a very highly active and very upset child with Autism, unfortunately this was then all taken to a Child Protection case because the care package just wasn’t working, I attended of course using crutches and still healing from surgery, not fully recovered and ended up infecting the wound where the surgery took place, further delaying the healing process. Fortunately this was short lived as I recovered and got everything back under control, I then continued as I always did. Looking after the family, being the strong one pain free.
I wish it ends here, but unfortunately a year later, the pain all came back, nerves compression x 2, same place as last time and because surgery was complex last time (stuck down nerves and scar tissue) it wasn’t an option a second time, why did this happen though after having had surgery! Because I went back into the same habits of taking on everything, though I was asking for more help and was giving the various services the warning of “if things continue I’m going to break again” the help was never given.
So we’re now at today, services have finally put in adequate help but far too late, I can’t have surgery again due to complexity, the pain now effects both legs and my back, I’m now seeing the Pain management team but with no success and in terms of pain relief, I’m having to use 50mcg/h fentanyl patches (to give you an idea, this is equivalent to being used for highly intensive surgery) and Codeine for any breakthrough pain just to manage the day to day, it still hurts but it’s bearable, life is miserable and I’m broken, I don’t see anyone, I get lonely, and no matter what I do I can’t stop the pain, all I can do is avoid a flare up, I still try to be the strong one for my family as it’s all I’ve ever known but I’m now able to rest from time to time.
If you’ve read this far, I congratulate you and please don’t end up like me, broken, seek help if you need help, look after yourselves because if something happens to you, who will take your place?