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Post by happyem on Feb 7, 2013 4:33:07 GMT -7
Hi Emily. I don't know how I missed this thread until now! I hope all is well and you are recovering well. I have a few questions, did they not remove the neuromas? Are you in the UK? If so which hospital? Good luck for a speedy recovery Hi Cate, yes they removed the main neuroma plus a couple of other smaller bits on another small nerve. I'm in the UK and was in Derriford hospital in Plymouth. Thanks everyone for the support and experience. In the end I gave up with the nurses doing the stump dressing, they agreed that I could do it myself and it's been much more comfortable since. I had a staph infection in the neuroma wound, so had a couple of days of IV antibiotics before they swapped me to tablets and let me come home on Monday (On Saturday I was all packed, meds done and paperwork completed, until a Dr saw the state of my wound) It is so wonderful to be back at home with the children, that first night they were cuddled into me, fast asleep, and kept stroking me in their sleep as if to check that I was still there. My hospital experience was really mixed and left me with some concerns.. On an individual level there were some fantastic nurses and doctors, but overall things just didn't seem to be functioning at all well. I was on a ward set aside for people recovering from joint replacement surgery, so some staff had little experience in caring for amputees, and it showed. Pain is getting a little better each day, and my exercises a little easier to do without needing to stop and let pain subside. I'm coping with transfers much more easily than I'd expected, so am as independent as I can possibly be given that I can only move around 2 rooms (and need to constantly remind the children or bend to pick up toys from the floor so I can wheel round!). I suppose all the bending and stretching is good for my core muscles, just have to try not to tip myself out of my chair...
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Post by ann- on Feb 7, 2013 5:34:39 GMT -7
Hi Emily Glad everything is going well, you sound like you are managing brilliantly, its always great to get back home, it sounds like your children missed you.
Like you my hospital experiences have always been mixed, usually great medical care, but as you found often staff not that experienced with amputees, and not always the facilities you would imagine that would be in place to help, especially for bilateral amps.
Regards balance in the wheelchair, it does get easier, I find I automatically do things differently, whether I am wearing no legs, one leg or two, in the chair, especially when leaning forward, picking things up etc., Have you got anti tippers fitted on your chair? if not, worth getting fitted, as seen a few people tipped backwards in their chairs, which isn't nice.
Take care and enjoy the enforced relaxation!
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Post by stonecutter on Feb 7, 2013 8:00:41 GMT -7
Glad to hear you're home! Hope that staph infection is under control.
Sounds like you're getting a handle on it. Thanks for the update!
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Post by happyem on Feb 8, 2013 13:20:31 GMT -7
Today has been a rough day, the pain is better than it was but still pretty bad, I'm not getting a lot of sleep, which always leaves me feeling a bit negative but I just feel so *****y disabled at the moment! I can do very little for myself since I can't get into my kitchen or bathroom and I'm finding it hard being so dependent on other people to get my basic needs met. I've had a disability for nearly 20 years so I feel I should be used to it, but I looked at myself this morning and just cried. I'm still getting used to the fact that I don't reach the floor anymore. I know it'll feel better once I've got new legs but right now it's tough. Sorry for moaning, it's just a down day
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Post by allenuk on Feb 8, 2013 13:59:28 GMT -7
Did they make any prediction as to how long it'll be before you get fully legged again, Em? I know that I had a calendar, and scrubbed out each day of the six weeks it took to get me out of there on two (ish) feet again.
It will end, this bleak period - but you already know that. Try and be the most patient patient that ever was. See that as a goal (just for now).
A
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Post by barclay on Feb 9, 2013 2:28:16 GMT -7
All those 'shoulds' - who says what you should feel ? :-) Please don't add that additional burden to your shoulders. You feel the way you feel - and you've already demonstrated that you have the wherewithal to come to terms with tough situations so you will master this too. Give yourself credit and believe in yourself. ((Hugs))
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ann58
Female Member
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Post by ann58 on Feb 9, 2013 8:10:27 GMT -7
All those 'shoulds' - who says what you should feel ? :-) Please don't add that additional burden to your shoulders. You feel the way you feel - and you've already demonstrated that you have the wherewithal to come to terms with tough situations so you will master this too. Give yourself credit and believe in yourself. ((Hugs)) GOOD ANSWER, BARCLAY.
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Post by happyem on Feb 9, 2013 20:44:29 GMT -7
All those 'shoulds' - who says what you should feel ? :-) Please don't add that additional burden to your shoulders. You feel the way you feel - and you've already demonstrated that you have the wherewithal to come to terms with tough situations so you will master this too. Give yourself credit and believe in yourself. ((Hugs)) Thank you Barclay, just what I needed to hear and what I've been working on these past few days, just allowing the feelings to come and trying not to get hung up on 'fixing' them or dismissing them. The clouds are starting to lift and I'm noticing what I am achieving each day, even if it's just sitting in bed reading to and playing with the children. Allen it's the usual 6 weeks ish for getting onto a prosthesis with new stumpy and hopefully more like 4 weeks until I'm back on old stumpy. Stitches come out on Monday and I start physio at DSC on Tuesday so I can start building in these milestones and noticing the progress I'm making. We're planning our first trip out tomorrow, just to a coffee shop down the road and home again but it's a start :-) I've also realised that I need to organise some help at home. My partner and mum have been fantastic but the cracks are starting to show and we need to alleviate some of the pressure. Adult social care have actually really impressed me, my personal budget has been set and I can go ahead and organise the home help so I'm hoping that will help us all cope better as a family. Once again, thanks for the support, it really does make a difference
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Post by allenuk on Feb 10, 2013 3:05:53 GMT -7
The older I get the more I realise that all we have is each other, and our kindness to each other. Nothing else matters.
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Post by ann- on Feb 10, 2013 8:03:44 GMT -7
Glad you are having a better day Emily, you're doing brilliantly so keep telling yourself that and don't be too hard on yourself when you're having a bad day. From my memories, this is probably the most frustrating time, in between hospital and getting fitted for the legs, you think nothing is happening but in reality it is, your legs are healing and you are adjusting too, so its not only the body but the mind too.
Good luck this week with the stitches coming out and the physio, it's all beginning to happen, you're getting there.
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cate6
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Post by cate6 on Feb 10, 2013 9:58:49 GMT -7
Hi Em, I'm glad you got home and I can only imagine the feeling on seeing your children My surgery will be at the Freeman hospital in Newcastle (Upon Tyne). I understand when you say about staff having little experience when looking after amputees, it's quite sad really. My own GP (she's new to the practice) admitted I was the first amputee she had examined. I hope things are going well and recovery is steady, as I always tell myself 'onwards and upwards'. Good luck with it all Em
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Post by happyem on Feb 15, 2013 15:25:47 GMT -7
Hi all,
Thought I'd do a bit of an update as its been a few days. Cate 'onwards and upwards' is my mantra too and I've certainly needed it lately. Emotionally I'm doing better, still slip into giving myself a hard time now and again but that's a habit of a lifetime and is slowly changing for the better.
The surgery pain is definitely easing now, two weeks post-op, but the phantom pains are pretty unbearable at the moment. I've found a few things that help; gently massaging the stump, either with my hands or with one of those hand held vibrating things (no, not those ones) with three legs, looks like some kind of alien space craft. The other thing that seems to be really helping me is to try and 'surf' the pain, which comes in waves and feels as though my foot's being crushed; just going with it, making a conscious effort to relax and almost see the pain as a separate thing - where is it, what does it feel like, what would it look like if I could see it - just so I don't get swamped by it. I don't know, it's difficult to explain but it seems to be working for me (and I don't think it's just the meds talking, although reading it back it does sound a bit odd). I know that I experienced something similar last time around with the dreaded phantom pain and it gradually eased off over the first few months, so I'm hoping for the same this time.
I've done a few outings with the children now, which I must admit I find pretty exhausting but it feels good to be doing some more normal family things - even if that does mean trying to 'encourage' two small children around a supermarket...
The really good news is that Adult social care have determined my budget and I've been fortunate enough to be able to employ the daughter of a friend to be my personal assistant. The friend in question is herself a quad amputee so her daughter understands some of the challenges and as she is also a mum herself isn't fazed by either the chaos of a house with 3 children living in it, or my current limbless state. I am so happy that it has all fallen into place so effortlessly, it is an absolute delight to have somebody around who's just here for me and to make my life easier, with the added benefit of making life easier for the whole family. My mum is still with us. We discussed her going home this week and I realised I just wasn't ready to manage without her help, thankfully she's happy to stay as long as we need her, but the level of anxiety I felt at the prospect of her going let me know I'm just not ready yet. I'm sure that once we're settled into the new routine with the personal assistant I'll feel more confident, right now I'm just hugely thankful to have such fantastic family support.
Check up with the nurse on Tuesday, hoping that new stumpy will be healed enough for a shrinker and that they'll finally order me a new liner for old stumpy and let me get back on my leg, can't wait to be upright again. :-)
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cate6
Female Member
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Post by cate6 on Feb 16, 2013 4:54:22 GMT -7
Hi Em, It sounds like you are remaining positive, but having down times and giving ourselves a hard time only means we are human! I'm so pleased you are able to employ a personal assistant...and one that has an understanding of your situation has to be a bonus! I hope all goes well with your check up and you can continue to move forwards in your recovery. Best wishes
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Post by barclay on Feb 17, 2013 1:27:32 GMT -7
I am glad to hear that you are feeling better - and that your mom will stay on!
These are just a couple of thoughts/shared experience, in case anythings strikes a chord and helps - no two people/situations are ever the same....
I did best when I took it to heart that MY job was to get myself better and do to what I needed to do that. Other people could do those other thing, but getting better was only on me - so not doing things which could slow down the healing became an imperative for me. I needed that as I am one who puts there own needs at the bottom of the list, only in cases like this, that backfires. I am more of a burden when I don't let other's step in and do for me - it may be a screwed-up way to think, but that's me.
The only other place I am irreplaceable is as a mother, so I tried to be an example to my son on how to handle tough times and to show him that I am there for him and involved in his life even when I can't get out of bed. He had his mom incapacitated from 9 to 13 and now, at 17, he's a fine young man (I am so proud of him!). He also had a supportive extended family which I think helped immensely - even if his father's a questionable influence.....
The worst time I think for kids to have their moms dealing with amputation is probably the teenage years - 13 to 17. When they are younger, the time you spend reading to them, playing cards with them, having stuffed animal tea's, whatever it is that you enjoy, is as valuable as the time you would have spent together being active. At younger ages, it's the attention that matters, the interest in them, the bonding. The teenage years are so much more complicated as it's the letting go time which is so full of mixed feelings (on both sides) anyway. Not to mention the complications for kids dealing with feeling embarrassed by their parents just because parents are embarrassing when you are 15!
Best, Cynthia
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ann58
Female Member
Posts: 278
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Post by ann58 on Feb 17, 2013 20:21:31 GMT -7
Hi Emily Glad everything is going well, you sound like you are managing brilliantly, its always great to get back home, it sounds like your children missed you. Like you my hospital experiences have always been mixed, usually great medical care, but as you found often staff not that experienced with amputees, and not always the facilities you would imagine that would be in place to help, especially for bilateral amps. Regards balance in the wheelchair, it does get easier, I find I automatically do things differently, whether I am wearing no legs, one leg or two, in the chair, especially when leaning forward, picking things up etc., Have you got anti tippers fitted on your chair? if not, worth getting fitted, as seen a few people tipped backwards in their chairs, which isn't nice. Take care and enjoy the enforced relaxation! Ann, like ur purple hair!!
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Post by ann- on Feb 18, 2013 0:25:01 GMT -7
Ann, like ur purple hair!! Thanks Ann
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Post by happyem on Feb 19, 2013 13:28:01 GMT -7
Hi all, thanks for the replies, Cynthia your thoughts did indeed strike a few chords. It was really helpful to think in terms of this being my job right now, to get myself better and I need to work on accepting that things may not always happen according to MY timescales.
Check up today went fine, wound has healed well enough to start with a shrinker and new liner for old stumpy has finally been ordered, so it will then be a case of looking at whether my leg still fits well enough.
Sadly we've just had news that my sister in law, who has terminal cancer, has seriously deteriorated and so my partner has to drop everything and go off to the other side of the country to be with her. Thankfully my amazing mum has once again agreed to stay a bit longer and at least my personal assistant has started so I have some extra help but I am worried about how I'm going to cope with the children. I'm also desperately sad that I can't be with my sister in law and spend just a little more time with her before she goes. It's just such b****y crap timing.
Life is tough sometimes
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Post by ann- on Feb 20, 2013 0:17:42 GMT -7
Hi Emily
Am glad that the check up yesterday went well and that the wound is healed well enough for a shrinker, I know when I had my revision that my leg felt much more comfortable wearing the shrinker sock.
Really sorry to hear about your sister in law, it must be very difficult for you not being able to spend time with her and also having your partner away at this time.
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Post by dawnbbka on Feb 20, 2013 0:58:06 GMT -7
Hi Em, Wanted to let you know you are in my thoughts and prayers. I understand the feelings and it does get better. Keep talking. Journaling on a daily basis helped me. Those down days do get fewer and farther apart. Being around others and seeing how much the grandkids wanted to be with me regardless of my disabilities kept me going. The therapy I went through had me work on my upper limbs. After a few months I had better biceps than my husband. It helped propel myself through anything and for long distances. To this day I can't stand someone else pushing me. I had a problem with my bathroom too. I can wheel to the door but the rest is on my hands and knees. I have a thick carpet to cushion the floor so I'm not kneeling on the tiles. Sounds like you are doing well and getting in your own routine.Hang in there. It does getter easier and less fearful.
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cate6
Female Member
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Post by cate6 on Feb 24, 2013 3:13:08 GMT -7
Hi Em, great to hear everything is healing well and so quickly but so very sad to hear your sad news of your sister-in-law. My thoughts are with you and your family, very best wishes x
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Post by happyem on Mar 1, 2013 15:02:06 GMT -7
4 weeks on and I'm finally walking again. Happy days :-)
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Post by stonecutter on Mar 1, 2013 18:14:07 GMT -7
Right on!
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cate6
Female Member
Posts: 75
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Post by cate6 on Mar 2, 2013 3:54:26 GMT -7
Yay! You go girl x
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Post by ann- on Mar 4, 2013 1:07:18 GMT -7
Well Done Emily, bet it feels great to be standing again.
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Post by gerberadaisy on Mar 30, 2013 20:48:48 GMT -7
Happyem,
Just wanted to send you a happy healing message. I hope all is going well, and that there is light at the end of your tunnel. Take care...
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