I feel lost and alone because no one understands what it’s like to be in agony all the time

Debs1968

I’m 49 and suffered spinal problems from a teenager after many visits to the doctors looking like a little old lady and still only 28 the doctor sent me for X-rays and blood tests which came back with the unwanted news that I had early onset osteoarthritis in my spine, along with degenerative disc disease and many other problems including 4 bulging discs some were pressing on nerves and very close to my spinal cord, this ended up actually bulging right into my spinal cord which rendered me immobile, if I stood up I would collapse and the pain was 10 times worse than childbirth at 31 I had a spinal decompression which meant I could walk again but was and still am in constant agony, I have the strongest painkillers possible including fentynal patches, pregablin, tramadol, naproxen and Ibruprofen amoungst other pain relief. Some days I have to double my meds and am still in agony, I am struggling to live in the house I’m in due to neuropathy in both legs and although I need another operation my neurosurgeon has said that the likehood is if I have the operation to fuse my spine because of my other problems that I am such high risk that it’s probable that I will end up completely bedbound. It’s hard to get through each day and I feel so low at times but having children still at school I’m trying hard to keep as normal a life as possible for them. I was also a domestic violence victim and had both my back and neck broke by a very violent partner and this caused me more problems. Some days I can’t get out of my bed because my body locks up or my legs won’t work, I recently snapped my ankle and spent 12 weeks in a cast which cause me more anxiety and depression and I feel very lost and alone at times because I feel no one around me actually understands what it’s like to be in agony all the time and I struggle to do things because I don’t have any support 

CockneyRebel

Hi Debs and welcome

Thanks for joining  our commmunity

I am sure some of our members will understand what you are going through
I have had spinal probs for 40 odd years with 3 disintegrating discs. so I know a little ofwhat you have to put up with
Please do come and have a rant or a chat when ever you want sometimes it helps to let off a bit of steam

CR

Pippa_Alumni

Hi @Debs1968, and welcome to the community!

I'm so sorry to hear that things are so tough at the moment. Chronic pain is so debilitating, and it can feel really isolating when those around you don't understand. Many of our community members also live with pain, so as CR says above, please do come and talk to us at any time.

With your circumstances, I wondered whether you'd considered pursuing an occupational therapy referral to see if there's any support they can provide?

Lynne53

Hi Deb's I'm so sorry that you are going through all this but you are not alone. I live with osteoarthritis just about everywhere and have had three risky spinal ops up to now. I consider myself lucky though because things which have could have gone the other way and although I can't do a lot of things I an not paralysed. If you need to let off steam, rant etc as Cockney Rebel says you have people here who do understand what you are going through. Constant pain drags you down and sometimes you need lifting back up again.  

sleepy1

Hi Debs, I feel for you as I know what its like and it is hard for others to understand unless they have suffered the same.  The trouble with the pain killers you become immune to them quite quickly and no longer get the relief but still get all the horrible side effects.
You have come this far hon and should be proud that you have dealt with everything and kept things as normal as possible for your kids and even though they might not say I'm sure they really appreciate that and will look back one day and see what a great mum you have been. 

I wish there was a miracle cure, if I find one will let you know, until then we just have to plod on (grin and bare it) as best we can.  I also snapped my ankle last week when I went to stand up my leg just disappeared......The pain didn't though! Oh what fun 

steve51

Hi @Debs1968

Welcome it’s great to meet you this afternoon.

Yes it’s very very hard to “prove” that “Chronic Pain” not only “exists” let alown is “disabling”

I have to “prove” this is the fact every hour of every day/week/month/year.

Please please let me know if there’s anything that I can help/support you with????

Many thanks.

Debs1968

PippaScope said:

Hi @Debs1968, and welcome to the community!

I'm so sorry to hear that things are so tough at the moment. Chronic pain is so debilitating, and it can feel really isolating when those around you don't understand. Many of our community members also live with pain, so as CR says above, please do come and talk to us at any time.

With your circumstances, I wondered whether you'd considered pursuing an occupational therapy referral to see if there's any support they can provide?

Debs1968

Thank you all for.your kind words and yes I've had many occupational therapists assessments and whilst I lived in London I had a supportive care package but since moving to Kent they are the worst place I've ever lived and I get no help at all my children are supposed to do everything yet they are in school and one is about to take her GCSE's and the other is due to take them next year so they need to focus on them and although they do what they can they cannot be expected to do much.and study for their futures. They are both straight A students and I would not forgive myself if my condition affected their education and their dreams they have worked so hard towards. Ok had an assessment again just last week and they have told the council that I must be moved into a bungalow with special adaptations to enable me to become more independent as my children will soon be leaving for uni 

debbiedo49

Hi @Debs1968 welcome. My name is also debs and I was born in 1968 snap!

Waylay

I totally hear you. Slipped a disc when I was 32, had surgery, then developed chronic pain. 10 years now. Lost my job, my career, my PhD, went bankrupt, my partner left me, etc. My Dad doesn't get that one can't just ignore it and get on with things, and he really doesn't understand depression and anxiety, which are extremely debilitating for me. 

I've distanced myself from my Dad as well as friends who don't get it or want me to prove it somehow. I've sought out other people with similar problems, because they not only believe me, they understand things like, "It's a short walk" means 30m for me, not half a km. They always give me the right chair, and if I can't come at the last minute, they don't get **** off with me. 

Many disabled/sick people join things like knitting/crafting/film groups during the day, because they need company and aren't working. Check them out? I know you probably can't knit with your hands the way they are, but most groups don't mind if you just show up and chat. 

Are there any support groups near you? There's a chronic pain group in my city, although I'm rarely able to make it there. 

You could also think about group therapy? I get it from a charity, and the group is very supportive. Just being able to vent about how much it hurts, how I feel, and how much I'm grieving for the life I lost is really helpful. I also see a counsellor who is really great. Again, cheap because she's part of a charity.

I've also been to a pain management programme (3 weeks, 9-3:30, education, ways to distract yourself, relaxation exercises, hydrotherapy, personalised physio, personalised stretching routine, and a lot of discussion of how pain affects your thinking and your mood, and how to change that thinking. Oh, also pacing, which has really helped me! The other 9 people in the programme were also great. We're still in touch by text.) Often hard to get into, but worth it.

I also saw a pain psychologist for 8 sessions, who helped me change how I interact with my pain. I used to think of it as my enemy. Now I think of it as a kitten, hurt and lonely, who needs attention, love, compassion, and rest. It has really helped.

I wish you could get a care package!! It sounds like you really need some help! Have you yried  detergoing ourto the CAB or contacting your MP?

Your determination not to "burden" your children is admirable, but remember that they love you. Perhaps sit down with them and tell them that you really don't want to distract them from their GCSEs, and you want them to have as normal an upbringing as possible, but you're having a really difficult time. Ask them whether they think they could do a couple of the things you find really difficult once a week? Make it clear that they can say no, so they don't feel like you're demanding it. You may be surprised by their answer. 

Hope something here might help!

And remember, we understand. We believe you. We know the struggle. You are not alone in this.

shazier

Hi debs 1968
Im shazier, i need to try and change that to shaz.. So sorry to hear of your suffering and difficulties. I have recently joined the group and everyone has been so kind,  No one will judge you and there's always someone to chat to, share things with and don't mind if, you need to rant and rave, we all need to let off steam at some point. Living with pain every day is never easy and its difficult for people to fully understand how hard life can be for us that suffer from it on a day to day bases. 
as others have said we understand, we believe you and always here for you, you are not alone.

leannebottom80

Hi I am Leanne and I have a carver in my spine and I am in pain all the time and it is now effecting my hips to but I have to deal with it as I have two girls age 7 and 9 and they see the pain I am in but my doctor want do anything about it becaues I have the children I sit at home when my girls go to school and cry becaues of the pain.so i do understand wot you are going though 

debbiedo49

Im totally with you today. It sucks.

leannebottom80

Yes I now I hate it 

debbiedo49

Tomorrow is another day! 

leannebottom80

Yes it is but it still don't go away xx

debbiedo49

I try to start off each day with a fresh page depending how I feel when I wake up. I am fed up losing time to pain but I know when to rest and recuperate. I know my limits. I try to set achievable goals depending on how I feel and give myself a pat on the back when I do them. Sometimes I cry to myself with the pain and the desperation but I just take myself away and huddle up in my duvet and try to ride it out until I feel a bit better . Then if I get a burst of energy or motivation I go with it. It’s just the way my life is. It’s so sad at times and I don’t want to be a burden. That’s what being on benefits and having chronic pain feels like, like you are contributing little and using lots. I just have to think about all the years I worked my butt off caring for others and putting myself last . It’s time for me to be cared for. 

leannebottom80

Yes I understand that and I am the same but sometime you need help because I now I do and my daughter's are great bliss them they are only 9 and 7 but help me so much xx xx 

debbiedo49

My son is 18 and helps me but there’s times I just wish someone would take care of me. We get through it. 

Misscleo

Iv been in pain very bad pain since 1983
I stiil cant beleve how stupid people are. Comments like do you feel better today? I asked "whats speciel about today then". Has something happened since yedterday to make a difference?
I csnt credit they think after all these years the pains going to go WHY! 
I now think what they mean is "i not going to let your health get in my way "
A aunt said at your age you should be and then gave a list. I said if you stopped talking about yourself for 5 minutes youd have noticed iv had arthritis and fibromyalgia for a lot of years and NO i wont be sky djving stupid 

leannebottom80

I total under stand I say to family and friends it don't go away it there all the time I get angry when they say silly thing