14 replies to this topic

[purple_faeries]

Hi there

I was wondering if anyone of you out there has had problems of this kind before.

I've been a para since march last year, and have just given in to my District Nurses and Social Worker and been provided with an electric profiling bed (which is different from the ones I've had in hospital and is nowhere near as good). This means that we have had to buy a single bed for my hubbie which we have pushed together from having a kingsize bed together.

Understandably this has put stress on our relationship and marriage, and my husband is very upset about it all.

When I was in the kingsize bed, I had a backrest to help me sit up (which I freely admit I no longer need because of the backrest of the bed being adjustable), I also had a pillow under my legs when I was sat up and between them when I was in my sleeping position, and a pillow behind my back to help me stay on my side as i fall over.

However, why I needed the pillow under my legs when I was sat up was so my knees were higher than my feet, which the bed i was in in hospital did, but my new bed doesn't it just lifts my entire legs up and helped prevent me getting pressure sores on my ankles. I needed the pillow between my knees when i was lying on my side was to help me with positioning and comfort and to make my positioning stable, the pillow behind my back is pretty self-explanatory!!

Anyhow, since getting my electric bed my husband has been looking for any reason to get rid of it, and he won't let me use the pillows that I need. I'm at a complete loss as to what to do, I feel that I need them to help me be comfortable, on top of having the electric bed, and he is saying that he won't let me have them because if i say i need them then there's no point in having the electric bed. He has a volatile temper as it is and whenever i mention anything he just blows up.

Does anyone have any ideas?

Thank you

Hannah

[hurbshankin]

purple_faeries, on Aug 12 2008, 09:09 AM, said:

Hi there

I was wondering if anyone of you out there has had problems of this kind before.

I've been a para since march last year, and have just given in to my District Nurses and Social Worker and been provided with an electric profiling bed (which is different from the ones I've had in hospital and is nowhere near as good). This means that we have had to buy a single bed for my hubbie which we have pushed together from having a kingsize bed together.

Understandably this has put stress on our relationship and marriage, and my husband is very upset about it all.

When I was in the kingsize bed, I had a backrest to help me sit up (which I freely admit I no longer need because of the backrest of the bed being adjustable), I also had a pillow under my legs when I was sat up and between them when I was in my sleeping position, and a pillow behind my back to help me stay on my side as i fall over.

However, why I needed the pillow under my legs when I was sat up was so my knees were higher than my feet, which the bed i was in in hospital did, but my new bed doesn't it just lifts my entire legs up and helped prevent me getting pressure sores on my ankles. I needed the pillow between my knees when i was lying on my side was to help me with positioning and comfort and to make my positioning stable, the pillow behind my back is pretty self-explanatory!!



Anyhow, since getting my electric bed my husband has been looking for any reason to get rid of it, and he won't let me use the pillows that I need. I'm at a complete loss as to what to do, I feel that I need them to help me be comfortable, on top of having the electric bed, and he is saying that he won't let me have them because if i say i need them then there's no point in having the electric bed. He has a volatile temper as it is and whenever i mention anything he just blows up.

Does anyone have any ideas?

Thank you

Hannah

Hannah,

I'm no counselor and please don't take this the wrong way, but it sounds like the issues at hand are not about a bed. Instead the issues may be more deeply rooted. If you can, get your husband to open up about what he is feeling. You may even suggest profesional counseling.

my $.02

Hurb

Edited by hurbshankin, 12 August 2008 - 01:33 PM.

[Scribbler]

purple_faeries, on Aug 12 2008, 02:09 PM, said:

Hi there

I was wondering if anyone of you out there has had problems of this kind before.

I've been a para since march last year, and have just given in to my District Nurses and Social Worker and been provided with an electric profiling bed (which is different from the ones I've had in hospital and is nowhere near as good). This means that we have had to buy a single bed for my hubbie which we have pushed together from having a kingsize bed together.

Understandably this has put stress on our relationship and marriage, and my husband is very upset about it all.

When I was in the kingsize bed, I had a backrest to help me sit up (which I freely admit I no longer need because of the backrest of the bed being adjustable), I also had a pillow under my legs when I was sat up and between them when I was in my sleeping position, and a pillow behind my back to help me stay on my side as i fall over.

However, why I needed the pillow under my legs when I was sat up was so my knees were higher than my feet, which the bed i was in in hospital did, but my new bed doesn't it just lifts my entire legs up and helped prevent me getting pressure sores on my ankles. I needed the pillow between my knees when i was lying on my side was to help me with positioning and comfort and to make my positioning stable, the pillow behind my back is pretty self-explanatory!!

Anyhow, since getting my electric bed my husband has been looking for any reason to get rid of it, and he won't let me use the pillows that I need. I'm at a complete loss as to what to do, I feel that I need them to help me be comfortable, on top of having the electric bed, and he is saying that he won't let me have them because if i say i need them then there's no point in having the electric bed. He has a volatile temper as it is and whenever i mention anything he just blows up.

Does anyone have any ideas?

Thank you

Hannah

Keep the bed and get rid of the volatile and selfish husband...

[Webwych]

Scribbler, on Aug 12 2008, 06:06 PM, said:

Keep the bed and get rid of the volatile and selfish husband...

I second that. Can you speak to someone - maybe your health visitor or doctor - about this without your husband being there?

[KarenFerguson]

First off, I would talk to your husband about what's really bugging him - it can't be just the bed situation & pillows, if that's the case then he needs to "grow up" a bit. I mean, you are his wife, his other half. If you need the pillows to get a good night's sleep then what's it to him?! Perhaps your hubby might need some counseling, or perhaps even a chat with other husbands or wifes of fellow SCI's.

You could look into getting a queen size adjustable "hospital" bed - that's what hubby & I have. I can understand your husband not wanting to sleep on a separate twin, I can imagine that might be a bit weird with different heights and such.

Anyway, good luck and I hope everything works out for you

[qbounce]

Shove one of those pillows inside his left ear and pull the label part outside his right . . .

Then don your boxing gloves (if you can't find 'em, all the better), and go to town on his mess of a pillow-face until he realizes he MIGHT have made an error in judgement on his part, orrrrr he can no longer judge your fist punches flying high at his face!!-HayyyAH

Seriously though, I agree with other posters here saying that he needs a talking to and soon . . . before things get UGLY!!

[WilliamLX]

I think your husband is being an ass! I can understand that he feels that if you still need to use pillows, having the electric bed is a bit pointless, but to be aggressive about it and to deny you comfort! I agree there has to be other issues. My wife has not reacted as well to my physical limitations (I can walk etc but am by no means 100%) as I would like (or would have expected her to if I had known what was going to happen) so I do sympathise with you.

[purple_faeries]

the main problem about it is i think that he sees us having separate beds as an 'end' to the relationship as it used to be, and as we are having problems at the moment due to everything, in his mind the separate beds are just a justification that we will not be 'as close' as we were before (even though we have made love whilst having the 2 single beds pushed together).

Everything is sort of being pushed all together at the moment as he has been my full-time carer since i became a para, and Social Services are not being constructive in getting us help. I don't really understand him because I have suggested that I perhaps look into respite care for a weekend or something (the only thing i can think of for that would be to go into a home or something temporarily to give him a rest from looking after me) but he won't let that happen as he'd 'be away from me'. I think that maybe him having a break from looking after me would do him some good.

I did persuade him a few months ago to go to the doctors and request counselling, which he did (allbeit begrudgingly) and he went for an 'assessment' (he also suffers from a very volitile temper and drinking problems) but all that did was to remind him that we're never going to have a 'normal' relationship, have kids, and generally made him more depressed. They said that he did need the counselling but it would take at least a few months for him to get an appointment. So that left him even more depressed and angry and every time he watches something on tv about problems with kids or something he gets really upset. (to top it all off i have a daughter from a previous relationship that lives with my sister (which my mother and my sister got taken off me in the first place) and they are currently trying to break all ties with us) which doesn't help.

I don't know whether it makes any difference but I don't have a 'diagnosis', (I didn't have an 'accident' i just woke up one morning and i couldn't feel or move anything below my waist), my gp is hinting that she thinks it is all in my head, which is stupid cos i wouldn't be able to fool everyone for a start, so i haven't have any proper 'rehab', i just had a physio that came for 3 weeks and then went cos i wasn't making any progress, grrrr i'm sorry.

I've got a BP, Peristeen, but he won't do it regularly even when i remind him, I ISC (well he does cos i can't) which again gets left by the side (it needs to be done every 3 hours and even then i leak in-between times), I don't know what to do. I'm trying to get SS to sort out carers/Direct Payments, but they are saying that they can't to my BP or cath me or anything which makes it pointless cos we are wanting them to get me up in the morning, but that is when i have to do my BP.

OMG I'm so sorry this is so long I never meant it to be, I don't have anyone to talk to and I don't know anyone that has an SCI (apart from all of you of course ;) and it is all just getting me down so much, I've got so much more to say but it's not fair on you guys.

I'm sorry for going on

Hannah

[Lucydog]

Am I missing something here? I presume from what you say you still have use of your arms and hands? If so why cant you do all the routines yourself? Also why cant you have children?

cheers
L

[purple_faeries]

on top of being paraplegic i've also got really bad rheumatoid arthritis which makes it very difficult for me to use my hands, and I can't have anymore children because i'm on so many drugs that i would have to stop if i got pregnant that my body wouldn't be able to cope, according to my doctor.

I am wanting to try to do more things but i am finding it really really hard cos nobody will show me what to do, and i'm not sure how i'd cope with the hoist on my own

Hannah

[Tinbasher]

Its probably easier to say "I hate the bed" than I hate you needing the bed.

Your story is a worry though did you not spend any time in a Spinal Unit? They should have shown you how to manage cathing and BP and they should have taken your RA into account as well. I know we sound like hard nosed bunch but to survive this you NEED to be as self caring as your disability allows and in my own experience that is actually a lot more than i first thought possible.

If he is drinking and neglecting the care that he has said he will give you then you have some tough choices to make. Ignoring your care is abusive and could have effects just as serious as physical abuse.

I remember while in rehab one girls husband used to go on about the wheelchair, it would ruin the carpets, scrape the furniture, run over the cat. She couldnt come home in a wheelchair. It peed off all of us so we had a quiet word with him one day. It is amazing how persuasive 6 paraplegics cornering you in an empty room can be

[kewlcatkez]

purple_faeries, on Aug 13 2008, 06:05 PM, said:

on top of being paraplegic i've also got really bad rheumatoid arthritis which makes it very difficult for me to use my hands, and I can't have anymore children because i'm on so many drugs that i would have to stop if i got pregnant that my body wouldn't be able to cope, according to my doctor.

I am wanting to try to do more things but i am finding it really really hard cos nobody will show me what to do, and i'm not sure how i'd cope with the hoist on my own

Hannah

Hi Hannah,

I hope that things are a little clearer and more tenable at your house right now. I am also with the other posters with regards to your husband's actions (lackof) and the general situation. I am at a loss as to what to suggest though-other than relate or someone you can both confide in ( which is often someone out of the situation)...

What I will say is that I sympathise and empathise with the other impairments which you have. I have a severe connective tissue disorder which means that pretty much all my joints dislocate multiple times daily - in fact my paralysis is as a result of it in a way. In my situation, I have permanent paralysis caused by the sp damage but I also can wake up with loss of sensation higher/differing places fue to nerve entrapment following dislocations. My hands are also affected (nerve damage and frequent tendonitis/dislocations). At first Intermittent self catheters were really hard for me to master and that frustrated me as I was a nurse previously (pre paralysis/hormones of preg exacerbated my genetic condition). Eventually, though it became doable and slowly became better and less stressful...so perhaps you should practice when you have some time and feel calm...

What I would suggest is asking your D/nurse or GP to refer you to a Continence advisor/nurse. They can be a wealth of knowledge. Also the Spinal Unit or even the local stroke/cva liaison may be a good port of call too as they are used to providing tips/teaching self caths to those with limited hand function. Just to provide you with some confidence, many many Tetrapelgics (quads) with limited hand function can and do perform their bowel and bladder programs. It can be done. Of course if you are like me though, and have full body issues, it can be difficult, but it is something to shoot for.

Getting back to what others have posted, Tinbasher mentioned rehab/spinal unit. Did you go to one or get some rehabilitation? I know it can be hard if an injury is not traumatic (and sometimes if it is!) and people can fall between the cracks, so don't feel bad if you didn't...... yet. I say yet, because I received my rehabilitation a while after. You can still benefit from going or even having some rehabilitation at a more local facility (say a neurology unit) who liaise with the Spinal unit. They will take into account your RA and hopefully you will gain some independence and control over your life. Much as I hated to leave my young children and my husband, it was the best thing for me to do and the intense PT and promotion of my independence empowered me to some extent. Hopefully this will be the case with you. And if you did go to rehab/spinal unit, perhaps you should enquire into a re-admittance to promote your independence. This will be especially poignant if your RA is more severe than it was back then or due to a more sedentary lifestyle, you have muscle bulk loss etc. The hoist may then not be an issue when you have been given some skills based on what you do have working - not based on strength etc (or I would never get out of bed! -seriously!)

My husband and I have a good solid relationship, but I am pretty much the "mother" the nurturer and as such it would never workout for him to undertake any care giving roles (outside helping me sit up in the middle of the night or listening for me fall off the shower board! j/k!! and the usual sort of supportive stuff you do for each other anyway...) It just wouldn't be healthy for our sexual health. I know him, and thats one difference between us. He is caring, but we have a line both of us are scared to/do not want to cross. For a while I had a PA to help me, especially because I have chronic pain too and it was overwhelming... things were so untenable, but slowly I got my head around doing things differently and even though it takes so much longer, i get there (invariably) in the end...
My husband actually found it very difficult the first year or so. He felt that he had to fix me and make me right again, because thats what he is used to - I mean at work he solves problems and saves the day etc...So it was a disaster in terms of *HIS* self esteem too, I think. That coupled with my avoidance of telling him everything about my new body....

Is it possible that the bed issue is a way of your man trying to tell you that he isn't cut out for the 'care role"....not that he doesn't care but that he is your lover, mate and friend, but wants to hold back on the care aspect?

If you do go through (more?) rehab and get as independent as possible, but still find that you require someone to do your ISCs and or Bowel program, maybe you will either be ready to look at Direct Payments and seeing what type of assistance you will be eligible for (based on your RA and paralysis) or perhaps you may feel that changing to a Suprapubic catheter or temporarily to an indwelling (with valves so essentially like using your bladder but opening the valve every few hours to pee) That way you can be more independent and in control and hubby will not have to undertake this role as frequently ..I wouldn't usually advocate an indwelling or s/p cath for someone who iscs are working for, but Socially and relationship wise I do not feel like they are for you...May be worth looking at if only whilst you sort something else out...

With regards to the bed...the others have had some fab suggestions...failing those I would look into seeing if you can russle up cash for one of those double/king beds which has 2 electric components (one each side) which move independently...may be an option as the one you have got isn;t working as you hoped anyway. Perhaps the NHS will find some funding somewhere based on your pressure areas or something...Most NHS provided elecy beds are long term loans so potentially this is doable..Although the beds I am thinking of may be difficult to get on long term loan...Can but try..eh?

Here is a bed I was thinking of:

http://www.laybrook.com/warwick2.html
(see below for an eg I found)


I wish you luck and hope that this has been of some use. Please ignore my whittering or typos, its 230am afterall!!

Take care,

K

Attached Thumbnails

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Edited by kewlcatkez, 14 August 2008 - 01:36 AM.

[fatdave]

hannah,

Like your husband i had a hard time excepting that my fiance and i couldnt sleep together in the same bed anymore, but i am the one with the injury. i thought that being in the hospital style bed would hamper our time for affection, and the closeness we shared.

but we found when we were feeling needy, or wanted to snuggle we could manage to fit us both in it for a short time. You're husband is scared, and having anger issues ontop of that doesnt help. he's male, and i can tell you that when us men get scared it messes with us, because we are brought up to be "real men" and "real men" dont get frightend, or upset. so alot of us turn that emotion into anger, or other self-destructive emotions or actions.

I have been in therapy for many years to help me deal with my emotions in a rational way. i still get upset and angred easy but i dont do the destructive things i used to do, fight, use drugs, abusive people verbally.

Have to been tested for Cauda Equina Syndrom? i suffered for years with "syatic type syndroms" that led to my paraplegia and after surgery they found and fixed multiple fractures and ruptured disk.

[purple_faeries]

I've never had any sort of rehab or anything, the only thing that I have had was straight after I became paralysed, and a physio came round for 3 weeks, and then she said that it was no point her coming any more because I wasn't making any progress. She did ROM with me and that was it. Although any time my husband hears me saying that I didn't have any rehab he gets mad and says that I did as he must think that the physio was rehab. I have lost all of my sitting balance and I also have a tendancy to 'flop' forward if sitting upright, so that is why I have to have the wheelchair that I do (emineo by handicare) which we had to buy privately (well we managed to get a grant for it) as the one that wheelchair services wanted to give me was also a tilt and recline one but it was twice as heavy so much that Steve wasn't able to really push it or to lift it up curbs or even push me up the ramp of the car (we have one where I stay in my wheelchair and sit up front next to Steve). It is nice having a tilt and recline one cos i can't lift myself up for pressure relieving, but sometimes i do wish that i have one of the small active ones like the ones they use in sport, i don't know how i'd be able to have one though with me not being able to sit up etc.

i would love to be able to do things, Steve is really lazy and the house is so dirty and such a mess and it drives me crazy because i have to have things immaculate, but i can't do anything, get dressed, shower or anything because i've never been taught. We are applying for Direct Payments to help get me up in the morning and put me into bed in the evening, my Social Worker is coming at the end of the month to assess me, but she wants to watch me get up in the morning, have my BP and have a shower, it takes 2 hours, and i don't really feel comfortable with her observing me doing these things, it's an invasion into our privacy and has even less privacy than i am used to. Plus she says that if we do get carers in or get Direct Payments they wouldn't be able to help with things that we really need them to like my BP and cathing for instance.

Would i be able to find a spinal centre near me and ring up myself?

I'm sorry it's turned into an essay again only it's hard cos i don't have anyone to talk to. I think it might help Steve if he were to meet other paras/quads and both of us talking and becoming friends, if he took it the right way.

I'm sorry

Hannah

[kewlcatkez]

purple_faeries, on Aug 14 2008, 01:13 PM, said:

Would i be able to find a spinal centre near me and ring up myself?

I'm sorry it's turned into an essay again only it's hard cos i don't have anyone to talk to. I think it might help Steve if he were to meet other paras/quads and both of us talking and becoming friends, if he took it the right way.

I'm sorry

Hannah

Hi Hannah,

In this instance the person who diagnosed your paralysis ( an ortho? or hospital consultant) would be the best person to get to contact the Spinal Unit on your behalf. They will need to send your MRI/CT results as well as your history (including the RA) and anything else which is relevant to your function etc. The initial referral to a named consultant there for instance may need to come from your GP as consultants generally can not refer to other consultants right off in the Primary Care Trust (PCT) setting (its different than when you are in the hospital and a referral is made, there are different rules governing PCT.community referrals- at least in England and Wales).
Initially the PCt may block the referral (they dislike tertiary referrals due to money) but its your right to be referred to a specialist for a 2nd or 3rd opinion), that coupled with the SCI diagnosis (and/or other neurological conditions leading to paralysis) will be enough to sway them.

Finally, I and many others are testament to the fact that rehabilitation and life experience with paralysis and other debilitating 'conditions' can improve independence. As I said above in my other message, it is possible to become more independent (even if you don't become fully independent). That will help your marriage if it is suffering due to those factors, but more importantly, it will give you greater self esteem and "privacy" something you say you want.
With re to the social worker wanting to observe your routine, it may be helpful for them to get an understanding of how you/your hubby helps you transfer for eg, but if they are wishing to see your BP/ISCs then I would suggest that you tell them that is not something you will allow right now. Instead push for rehab or at very least a continence Nurse specialist (pref one who has experience with those with limited hand function) so that you can "put the money where your mouth is" and make real your claims to have more (as much as possible) independence. Added to that it is not a Social workers role or remit to say if you are performing a BP or ISC properly..so I do not see how they can want to go there...perhaps this is a misunderstanding as to what they wish to see?? Please DO see the following as it is so much more than just a BP guide...Spinal injury Uk Bowel management


People here are very o[pen re their routines...I know that I for one would share info with you as to how I get around certain obstacles in my routines (bladder etc..or even transferring) if that is what you need. Also go to Youtube and look up transfers etc. Apparelyzed has a "page" or whatever they are called which has many helpful vids on it., these may help you in the interim, but you really need to push forwards and contact people today. Be your own advocate, its hard to do, but will be so worth it.

Finally, did you see what I wrote above about your programs etc?? Here it is again:

""or perhaps you may feel that changing to a Suprapubic catheter or temporarily to an indwelling (with valves so essentially like using your bladder but opening the valve every few hours to pee) That way you can be more independent and in control and hubby will not have to undertake this role as frequently ..I wouldn't usually advocate an indwelling or s/p cath for someone who iscs are working for, but Socially and relationship wise I do not feel like they are for you...May be worth looking at if only whilst you sort something else out..."" This is just one of many ideas which may help in the short term to provide you with some independence. No they are not ideal solutions, but they are viable options...

etc etc etc..there ARE options and you need to wither take some control and do what you can for your self in terms of setting the coggs turning, or find someone who can for you. Also perhaps worth getting in touch with the Spinal Association's helpline: Freephone advice line 0800 980 0501 (UK only) http://www.spinal.co.uk/B-02.aspx, they may be able to match you with someone who can be your advocate or at very least help you through this process.


Good luck.

Also, something is nagging at me re your story......I dunno...
Good luck anyway..

take care,

K




edited to add, I saw this in another of your posts:

purple_faeries said:

date='Aug 4 2008, ']
Any help on this would be appreciated as it has been over a year and they still don't know what is wrong with me (neurological) and I haven't been given any help or information or anything. I am just trying to find things out myself.

Thanks

If this is the case and you have not got a definite diagnosis (as it seems in the quote from a prior post of yours), then you may have good grounds for the Spinal unit to reassess you and ?provide any relevant rehab. They deal with many neurological issues and diagnoses, sci being on of them....



K

Edited by kewlcatkez, 14 August 2008 - 01:41 PM.