Hi all this is my first post (aspergers makes me ramble a little so excuse me for that) on here I have read so many posts that match the pain I suffer and I relate to so many yet rather than an issue regarding the pills or cause of the pain I hope to connect regarding the psychological effect the pain rollercoaster has on us all. I am looking for peoples advice and experiences to help rebuild my self worth and outlook on the future after a real tough time caused by the pain.
As stated in my bio since 2007 I have been on a rollercoaster of pain that never ends. As bad as dealing with the pain is the depression that accompanies it and also the feeling of worthlessness, helplessness, uselessness and general feeling of no longer being able to be a father or husband. My ex split with me when she didn't want to be a carer only (our son is autistic) and on top of our son's condition I was an added burden to her so I understood her frustration.
It has taken me until now to realise I should not be feeling guilty for the assistance I need from time to time. I will no longer feel I should appologise if I have to ask people to help when in supermarket etc because I did not ask to be infected by this debilitating pain.
I just hoped I may be able to see if others have felt like it is like a rollercoaster of pain and ability/mobility v lack of?
Do others feel the guilt of needing to impose yourself on others to help?
Has it caused others marital issues such as wife/husband not wishing to be carer?
Do you feel a failure as a parent as pain stops joining in so many activities son/daughter wishes you to join in with?
How do you balance the what know how to do with what are able to do now?
My whole support group is now at zero due to ex, How would one even begin to build a new support network that will help feel safe again?
What other ways has the pain impacted on your lives and how have you overcome it?
So sorry for being deep with my questions but to know I am not alone in the struggles physically and psychologically as they do go hand in hand. The mind still knows how to do all the activities I could do prior to injury yet body says "you have got to be joking if you think you can do that again" the acceptance of the new limitations placed upon us is harder than even the doctors accept. Luckily my GP is a member of my church so I got to know him socially and he is far more open to how my health has a hold over me. This is a big help yet even he says the options are very limited for any available help. He knows I was offered surgery with as high as 10% chance of success and higher chance of further spinal cord damage and nerve damage will never be able to be fixed. he knows the damage and issues are progressive so I will only get worse and as such I am able to just phone him directly and have medical reviews or tweak meds if side effects are too much. I was taking : tramadol, dihydrocodeine, gabapentin, amitriptyline, oramorph, buprenorphine and sertraline and could not handle the feeling of everything seeming like a dream so asked if dropped dihydrocodeine would it help and if would reduce pain management and we did cut it. I felt clearer and pain remained at same level so did help.
Please contact me with your experiences and advice but please be positive I do not wish to have people be negative towards me unless in constructive way. My ex did enough negative talk to last a lifetime and I am looking to break free of it even hopefully go on a mini cruise to belgium paying for someone to travel with me as a carer/travel companion and rebuilding social activities as have been stuck indoors for over a year.
God bless you all and I prayer for a pain free day for you all
Written by
Blakespops
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Welcome on board. You will us all very supportive of each other when and where we caan. Hopefully mostly positive but not always easy when you suffer chronic pain + many debilitating illnesses. Sort of the Good, Bad and Ugly!
You have given us plenty to take in and much to think about.
For me I shall need to listen several times and think out best to offer any advice.
As a carer for my husband that for me is a good place to star. Sadly and this isn't meant to be negative - many partners or spouses just can not cope when the other person becomes seriously and often permanently disabled. The bit in the marriage vows saying...for better or for worse really means not to worse.
The fact the your wife discuss your own situation with the neighbours is appalling. She had no right whatsoever and I can find no reason as to why she would. Maybe she was hoping for their understanding inwhat to her was going to be difficult times. I just don't know.
It does sadden me to hear you haven't been out for a year. How do you manage with GP apts or hospital? Or don't you count that as going out? Have you had an assessment from your local authority as to your needs for assistance? All this should be in place for you. There are support groups but few and far between these days. Many work on line - forums etc which can be good and fun. Do you use Facebook?
As i said I am a full time care for David. I am also registered severley blind as the powers that be now like to call it. Not something I advertise widely -I am me first and blind second. Same as you - first a man srcond you have a disability.
OK for now. Must spend a little time with my poor neglected husband. He says I listen to my computer more than him. You know what? He is right!!
Thank you for the reply. Firstly as GP is from our church I am able to phone him directly and have my pills etc delivered, food shopping etc is all done online. as for hospital they have stated they can not help so do not attend anymore. I told GP I know what pain clinic will do and say so is nothing new after going through it twice already. I do as much activity as I physically can to keep active some days I push way too far and end up paying the following days. then some days a cough or sneeze is all it takes to put me out of action for a month or 3.
As for my ex. One day when I was at my worst and had even called the GP to come give me an injection of a muscle relaxant and some morphine during this episode. anyway our son who is autistic came in and said he was hungry and wife demanded I get up and feed my son. no matter how much I tried I could not move. she turned it around and told neighbours I refused to feed my son when he was hungry and upset. thus they were turned against me, other neighbours have had similar anecdotes such as when I had accident in bed. next maybe time I was stuck in the bath. all normal incidents to us yet turned nasty somehow by an ex who actually said I would be better off dead. she had no intention to use neighbours as a safety net she left me with people who are now hurtful and nasty and only because they saw year after years seeing and hearing how ex treated and spoke to me. I just didn't bother arguing because it would have made it worse. now I am paying for it.
It was my occupational therapist who said about finding a travel companion /carer who would love a paid trip on a mini cruise. as I had someone living here I was not able to have any help. now the local council have made changes and cuts so I am only seeing OT once a year rather than once every 3 months
I have not been further than three steps outside my backdoor as unlocking gate on bin days allows my bins to be emptied thanks to council doing that for elderly and disabled who register. This is where neighbours can be crude, rude and hurtful in the remarks.
God bless you and your husband and may he bless you all with his healing hands
Andy
xx
Hello blackespops
Welcome to this site and sorry for your pain.
Paton is one with knowledge when it comes to benefits and dealing with an uncaring Society.
I have suffered Chronic Pain and the associated Reactive Depression.
One thing that worries my regards your situation is do you have someone who can look after and cater for your needs, like shopping and visiting hospital.
Has the GP arranged visits to a Pain Clinic and if not have they thought a visit there was counter productive. As personally that would be one good place too visit as they would be able to give support and treatments for your Pain.
One way forward would also be a good idea if adaptions could be undertaken in your home so that you can do basic things to help yourself within your home. So if this is not the case have words with your GP and arrange a visit.
Your main concern I understand will be getting around outside to the GP and hospital appointments. There are benefits that are available so you will be able to sort out something there I should imagine
Yes, pain did stop me from being a wife and mother and breadwinner. I became guilty of saying sorry for not being able to do things, I built up a wall and I stopped making friendships as I thought I would be a burden!
Reality is that I became depressed and too scared of being a failure.
It took a while to accept my limitations, I ended up divorced as my other half used the bottle to cope with his burdens. I thought I had failed as a mother by letting my marriage go. I have not taken communion nor have I been to church other than funerals and school services since as I felt I had failed to keep my marriage vows.
Skip forwards a few years, I'm still coping with pain. I'm working again at a level I can manage in an area I would never have considered back then, and I love it! It doesn't pay as well and I'm earning now what I earnt at age 18, BUT I am happy.
I have one child in uni, one hoping to go next year and one plodding on undecided what exams to take!
My children can talk to me about anything and everything. They are hardworking and independent more than their friends, they are able to cope with upheaval and upset because they have learnt resilience. They are not afraid to fail, they know that they can always change direction or try again.
I still let them down when I'm unable to manage driving them, or being able to go to things to support them, but they never make me feel bad, they are sometimes upset but they understand my limitations more than I do at times.
I still get frustrated at times by being unable to do things, I still feel guilt and anger at times but I learnt to process these feelings and move forward.
I still push myself and never give up. I have crap to deal with like most people, life is never easy, but by having so many challenges I appreciate the good times more.
I do have a good support network, my mum, my kids, my workmates and a few friends.
I used to say why me? What have I done to deserve all this? I must have been very bad in aprevious life. Now I just say it as it is. Those who stand beside you understand your struggles and come to your aid with a hug or cuppa or something practical. outsiders just raise their eye brows in disbelief that something else has happened to me or our family.
I never lost my faith, it's something personal to me, I tell my children a church is just a building, a meeting place of like minded people. My belief is mine to share with God. I know I can take communion and I can be part of the church, I just made a vow and I broke it. ITs my choice!
You have a support network within the church, you have a support network here too!
Ps, my second child is an aspie and dyspraxia. So I get you 😉
I can relate and empathise with your situation. Yes I have people from church who come visit with me although I do only get to join in via a live link they do over the internet for me. Normally it is a podcast later that day but thankfully I am able to feel included and even during the time of fellowship and socialising in the "cafe" area a camera link allows people who such as I to be able to link up with friends. they can click on our names and talk one on one live with us. Maybe it is not quite the same as leaving the house but it is as close as I have been able to get.
As mentioned I see this as a blank canvas where I am able and willing to allow the paint to land and run anyway it wishes to and just see where I go in life. I always have it planned out but as the pain would never allow true planning I thought use it's irregularities as a positive so I may become a disabled carpenter or I may become a desk slave in an office, maybe I am not ever able to work again but work is not what makes us it is what is on the inside. I had considered suing the bodyshop as they use false advertising and refused to sell me a new body I need. lol oh if only it was so simple.
Yes I will make it and grow a new support network that is real rather than cyber buddies who are there emotionally and in words but in life when times are tough a hug is needed and a computer is unable to substitute a real hug of friendship.
As you improve emotionally you may find you are better able to deal with or manage the pain better. Like a lot of people my pain never leaves me.
I hope that even this small thing may help.
I read your post, poured myself a cup of coffee, and then I read it again a few more times...I am overwhelmed at the insensitivity of your exwife and nieghbours...Then I thought to myself "who cares what they think or say?"..You are a human being in need of help. Just be yourself with your nieghbours, they will come around in time. Maybe your nieghbours don't want to be "in the middle" of your fight with your ex...My advice to you is that your son will love and adore you for who you are. Just because you are unable to do the activities that other dads can do, does not make you a "deadbeat Dad". Children are smart. Forget your wife, forgive your wife for being unable to help you. Your ex chose her path in life. You don't have to worry about her anymore. Take care and I wish you well
Thank you so much Suzanne, I agree with all you have written. Nothing you say is wrong but at the same time it is the years of conditioning I am over coming so although I am trying it is harder than it may seem on paper. if was able to simply work on this issue every day it would not take long at all but I have the rollercoaster of pain that keeps switching and from a very good day you can swap and have the flip side of a coin by reaching too far, sneezing/coughing or twisting the wrong way. You never know what or when it will come and kick you into one of the pain highs where you become bedridden and cry yourself to sleep if even able to sleep. because along with the pain rollercoaster is the depression it comes with. I have not in 8 years had one full week of being able to be as near to normal as is possible. I spend more than six months a year paralysed for all intents and purposes. and as am unable to know when will be ok even planning to be able to break free and go on a mini cruise by November is for me a huge positive aim to go for as will be one day short of two years since I left this house to do anything and even that was a simple trip to sainsbury's.
andy7591.wix.com/bethchange shows how possitive I am trying to be. Maybe I will maybe I won't find a carer willing to go with me on the ferry but I am putting the effort in and willing to try and turn life around ignoring the past and beginning anew from scratch with a blank canvas and no preconceived ideas of what direction for the good my life will take. I aim to be open and flexible to however it works out.
It does worry me that you are advertising for a companion to go on this trip with you. Very good advert it is though.
Would it be better to try through a care organisation? They would match you with someone who probably has similar interests, has been vetted and will be completely trustworthy.
Would be good if you could meet him, or her, beforehand to see how you got on. Maybe for a few weeks before you plan to go on your exciting trip. Maybe take you out on short outings to see how you manage. It is a wonderful positive challenge for you and little steps first. No pun intended!
You are very vulnerable and I would hate to think of anyone taking advantage of this. Sadly there are some nasty people in this world.
I do state on the site about meeting for a meal or a drink so it is not weird on the day meeting at the booking in desk. As stated yes could use organisation but I was quoted something like £500 on top of paying the travel costs this is why I am (not just from here but on facebook and twitter and other places) saying it would be nice if can find someone who is willing to be there simply because they are a nice person who has enough compassion for a fellow human in need and given how close it is to christmas it will be a chance for whomever goes with me to buy some gifts would not be able to get otherwise. I will be able to do background checks on the people as have friends from church who do that kind of work for a living. But I guess the biggest over all benefit of advertising is for the first time I have opened up to strangers maybe but have made progress and as part of my healing process I have to show myself what I am able to do on my own rather than having organisation or charity do the leg work for me so to speak. what I am battling is not all about the ex-wife but further back in my past when I was sexually and physically abused. Ex cut deep with her abuse opening old feelings and making me build protective walls around me so much and Ian from church pointed out it may be stopping others getting in but it is stopping you from getting out too. In effect it is a self imposed prison you have build around your emotions. now I am attempting to break the walls down and be less self critical and more ce la vie as will never be able to please everyone and should stop being worried about what others think of me as I am as good as they are if not better because I would rather go out of my way to help others rather than being borderline abusive and discriminatory. I had a long chat with a member off this board via messages and I can totally connect with that person and said if I could I would take their pains onto me if the Lord would be so kind as to free such a wonderful couple. reading the old posts is also a help as am able to see answers to conditions I have and I guess it is no shock I find many who have similar issues thus many in my prayer list and share my empathy. This site is such a blessing at this time as I open up and I believe that Jesus directed me to the site for a reason and it will become clear one day.
No the church offers emotional and spiritual support but stop short at physical help. I will find local support groups. Slowly building up a network of people I could trust if I need help, I have been out many times and battery has died. and normally ex would have to push the chair. if going to belgium alone what would I do if battery died? how would I get to pick up point for transport back to ship? apart from some care needs it is only "just incase " I need someone there Plus not sure if you know Bruges but it is all cobbled so all bumping does cause spasms and normally I would go to cafe have a coffee and allow back to calm down. yet I am sure you know it is possible I can be alright on the day or ill as can be. unfortunately we do not have ability to turn it off for holidays or something. if only eh lol
Hi Andy I moved away she dose not no were I live but she knows the city I moved to she is in prison now because she had me beat up three off then pulled me out of my wheelchair and gave me a good kicking and they had steel toe cap boots on, I have now got a good support
I don't post very often but read the new posts every day. I also have difficulty getting out and about. I understand about the guilt (have that in abundance), the feeling of uselessness and perhaps most of all the feeling of sheer frustration.
I'm not sure I can offer any advice at the moment but offer loads of empathy.
Please let us know how you get on. And if you do go on your cruise, I would be very interested in hearing about how you get on especially with regeard to practicalities of getting around the ship etc. Bruges is lovely but you are right about the cobblestones - be careful.
My mum asked me to think about somewhere I thought I may be able to go on holiday in the future and the thought of miles of corridors at Gatwick is a definite no no. One of my suggestions was a cruise to the Fjords. I've never been on a cruise but my thought process was the scenery would come to us and I wouldn't feel so guilty if I couldn't manage the shore excursions and there would be entertainment and probably a spa available. The other thought was a continental river cruise with travel there by train or coach. Well we can still dream!
Thank you so much for your kind words and empathy.
I was unable to sleep last night due to pain again, so I used the time to draw a plan for a dog feeding station. distracting the mind and stopping it from focusing on the pain is a battle when it happens.
If I am unable to find someone willing to be my carer as well as companion for the weekend Bruges will become a dream and not a reality. everything is reliant on that part and so far the response has been very very poor.
if you are in a wheelchair and use eurotunnel you and a carer get to travel in first class. it is wonderful. my ex and I used to take our son to butlins as it is all timed so easy to plan the day given son's autism. pity not going this year with diversity being there.
I guess the only way to make it when pain kicks in is to be ultra positive today I have done my budget on excel for the next three years. I filled my daily pill dispenser things as have four weeks worth of the plastic things. having them helps remind when due next lot of pills maybe small simple things to do but counting 28 pills each day so 784 each four weeks has to make me a rattle. lol
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