Partner with chronic pain

[FruHagen]

Hi all

Wondering about my own situation and how others have dealt with similar.

I have had two long relationships in my life - the first, we were not married but we were partners. Unfortunately a year into the relationship he developed ME and that spiraled down into very bad health, mentally and physically. In our 20's we had to stay in a lot and he was sick or sleeping most of the time. I cared for him for this time but I also had an affair some years into the relationship (that I hated) and ultimately I had a nervous breakdown. Our relationship ended because of him being sick and nothing ever changing.
That was 11 years together.

Now I am married and have children and my husband has incredibly bad back issues. He has had many serious spinal surgeries and been ill for most of our relationship.
Now he is in chronic pain and takes a lot of painkillers. This means a lot of sleeping, irritability and poor health.
This has been 15 years.

So anyway I of course struggle with my life as it's so hard to be with someone who is in pain a lot.
They are not so easy to be with and it is hard to have fun.

So does anyone know why I have ended up with two sick men? I am a crazy hard worker and have made ends meet for me and them but that is too simplistic an explanation.

Anyone in a similar boat, or have anything positive to add? I have children with my partner so it's not a good idea for them that I leave.

We often repeat our parents relationship.

Was one of your parents chronically I'll or disabled - or were either of them a caregiver?

People don't choose to become ill or have a chronic illness. It's not particularly fun for the sufferer either. It does effect mental health. I've had lots of major back surgery and at one time are painkillers like sweets. I didn't enjoy the hand I had been dealt. Not everyone can handle living with someone with a long term illness.

@EvenMoreFuriousVexation no, they were not 🙂
@SnatchCassidy yes I understand that the sufferer suffers more and I am sorry this happens but it's obviously something I am cut out for as it's been all my relationships - 25 years

But you haven't been happy with it though.

That's really sad. My husband had a just recently become disabled and our lives have changed. Do you still love him?

@SnatchCassidy I don't know. My feelings are complicated as are everyone else's. It was tragic when the people I loved became ill. It can be impossible to reach out for help or support because you're not the one who is ill.

Of course, to an extent though chronic pain becomes a way of life your whole being revolves around. You become your condition. I sometimes shudder at the amount of painkillers I used to take. I don't miss those days I have to say, but the nerve pain I still live with does have a constant impact. What is it you feel you are not getting in life as a carer and what do you feel can happen to change that?

I hear your frustration, what are you wanting from this thread?

Do you want things to change? It is not possible to change your partners health, the only thing you can change is if you wish to contunue in a relationship with him.

You say you do not wish to leave so is there anything that could make both your lives easier, more help for example.
Councelling for you both to understand each others point of view.

You maybe the fit and able one but if you feel many of the daily pressures are on you it can lead to resentment and that will affect both of you within your relationship.

You both need a frank discussion.

My DP lived with chronic back pain requiring surgery and often lengthy hospital stays for 7 years.

He lived every day with shooting nerve pain, back pain and constant pins and needles down his leg, when it was worse than usual it would affect his bladder and bowel function. His last flare up kept him in hospital for 6 weeks just before last Christmas and at the time there was no patient visiting due to Covid.

He tried to keep a positive mindset but understandably on bad days it made him depressed and irritable. The pain meant he very rarely had a good nights sleep so he was often exhausted so needed to go to bed early and required medication to help him sleep.

Luckily he was accepted for pioneering treatment at a local neurological hospital and has recently had a spinal cord stimulator implant fitted which has changed his life.

I completely understand how it can impact family life and a relationship. Counselling and pain management clinics are often helpful to patients as coping with chronic pain can become overwhelming physically and emotionally.

So does anyone know why I have ended up with two sick men?

Because bad things, like illness and disability, can happen to anybody, even good people.

Unless there is a complicated back story I can’t see anything that suggests a pattern.

I do understand how ill health changes everything for the ill person and spouse or family, and trying to deal healthily with the powerful emotions like anger, frustration, fear and disappointment that come with it can be immensely difficult.

It can be utterly self destructive though to turn thoughts about ‘deserving it’ or having brought it on oneself when bad things happen, even if this appears to offer some kind of making some sense of it. Counselling will help work through those kind of thoughts and examine possible patterns but do also try to allow that sometimes life is cruel and unfair and no one is to blame.

So we have to grieve for the life we wish we had and for those dashed hopes and expectations. It hurts😢 Sometimes it can bring a couple closer if they can share and empathise together about the struggles and lost hopes but that is not always possible.

I really recommend making contact with your local carer support organisation and/or Carers UK and they will try to help you. Your GP surgery may have direct contacts or a carer support. So many carers struggle with their caring role whatever form it takes, and that’s only human. I’m sure you will find a someone willing to listen and empathise.

Life with illness and/or being a carer is life for a great many people so you are not alone. Sadly. But this means there are people out there who will empathise with you and try to support you too

Wow @SunburstsOrMarbleHalls that is great that he was able to get that new treatment. Whereabouts was this offered?
Yes, my DH struggles with sleep so is often very tired

@MossRock yes, you're right and I know it really that it's just how life is. There's no complicated back story or anything that created the situation. I didn't seek out people who needed care as both of them got ill years into the relationship.
I will maybe try counseling and try better to work out my feelings there.

Thanks to everyone else for taking the time to reply I wanted to see how others coped really. I don't want to leave the relationship, just deal with it better, and be able to accept that people in pain are in pain and are not necessarily easy going, nor should they be. So strategies for living life like that and acceptance generally.

Pain is such a dark unseen energy, it brings anger and sadness yet is hard to pinpoint as the culprit

I've been living with a partner for 5 years with chronic back pain, complicated surgeries etc.

A close friend of mine happens to be a well respected pain psychologist who specialises in research in the area of spinal pain and the brain.

She once described to me that it's like having a third person always there in the relationship, you him and the pain.

It changes the pathways in the brain, and some of it can be rewired and improve that chronic pain.

@FruHagen My DP is a long term patient at the Walton Centre, Liverpool, it is a specialist neurology hospital. He was transferred there 6 years ago after our local hospital became concerned when DP experienced some saddle anaesthesia. Since then his care has been received by Walton based consultants. Every time he required hospital (ie when he lost sensation or spasms and pain became crippling) the local hospital would always transfer him to Walton as he was under their specialist care. The Spinal Cord Stimulator implant is quite expensive so there is quite a lengthy process to check eligibility.

Previously DP had numerous lengthy hospital stays, surgery had failed and was not a future option, Injections and physio were sadly not effective. DP could not take strong painkiller medication long term during the daytime due to his job that required a lot of driving in the UK and long haul international travel. Pre Covid there was no option for him to be office based. He tried to continue being a active as possible and keep his weight within a health range to limit the pressure on his back.

I think it took about a year of appointments with doctors, spinal nurses and phycologists to get to the point were he had the trial - a temporary SNS fitted with external battery for a week to see if the implant was likely to significantly help relieve pain.

Unfortunately a few weeks before he was due to get the implant Covid hit so all elective surgery was cancelled. He finally got the SCS in March this year. All he has now is a dull achey back which naproxen deals with fine. The results have been better than anticipated, no shooting nerve pain, no pins and needles, fully functioning bladder/bowel. No spasms and no chronic pain in his lower back. He will require surgery to replace the battery every 7 - 10 years.

Spinal Cord Stimulator implants are offered at other NHS trusts throughout the country but it is not a suitable treatment for a lot of people for various reasons and it also has varying levels of success from patient to patient.

So does anyone know why I have ended up with two sick men? I am a crazy hard worker and have made ends meet for me and them but that is too simplistic an explanation

Simple answer? Because you were lucky.

Lucky that it hasn't happened to you. After all, put yourself in the position of suddenly becoming very ill and in pain - cancer, perhaps, maybe a car accident, arthritis. How do you think you would feel if your husband was given a miracle cure and had an affair/left or just complained about what he's done to deserve a cure only to end up with a wife in constant pain?

@SunburstsOrMarbleHalls thanks for taking the time to reply.

My DH has exhausted surgery options now also. I think it has been 7 in total. It sounds like something amazing that your DP got, and of course everyone is different and it might not work but maybe we could try and pursue the same?

Not sure if it's even an option where we live.

It's been tough since the last surgeon said - sorry we can't help anymore.