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Accepting chronic pain for life-- advise please.I am sinking.

Firstly I feel bad for not posting for so long.Basically I didn't really have anything positive to add & didn't want to bring anyone down.However I desperately need support from people who have suffered/are suffering from chronic back pain.Where to begin (AGAIN)-discectomy 2 levels about 3 yrs ago,11 mths ago =scoliosis curve correction,laminectomies,decompression & extensive multi level fusion (lumber & sacral) with corresponding rods/hardware etc.
Now 11 mths on I am no where near returning to work (if ever? and being a breadwinner makes this beyond stressful).I am in severe pain 24/7---it is around 5.30 am & after spending hrs in bed,in pain-I have given up on sleep tnite?tday--kiddies will be up at 7.30am & need me to get them ready for school.This has been happening a lot & sleeping tablets are not an option. The fusion was a success from a stability point of view but if anything I am in worse pain than before the op & that really was my objective of the surgery-altho I do know stability was the surgeons goal & he was hopeful pain reduction would follow.
I really cannot bear the thought of being in this much pain for the rest of my life (early 40's).I really don't know where to turn.Hubby not a bit sympathetic but then again I am hard to live with having been in constant back pain for 10yrs or more.I'm still having to take opoids, which I hate but need just to be able to do stuff for the kiddies etc,anti inflammatories ,paracetamol,lignacaine patches & any other gel/cream ,herbal or otherwise that may have been recommended.i've done the swimming,PT endless walking etc.
I had trigger inj's a month ago to no avail & last week an epidural & facet joint procedures.Whilst these can take up to 2weeks to reach full effect there's no sign of any pain reduction.I have had umpteem of these in the past plus rhizotomies etc. I still had a bit of hope as surgeon had said that maybe something else surgical could be done but on a recent review of my latest scan he doesn't think surgery benefits will outweigh any risks.He did say he wouldn't put me through another surgery unless he could 'guarantee' I would gain appropriate pain reduction from it. just a few days ago he broke this news.He was honest & said i'll probably be looking at pain management from here on in.......This has shattered me.I've been unable to stop weeping & fully assimilate the info.I have been 'pain managing' for over 10 yrs now & the fusion was really my last hope.
I don't mean to sound all 'poor me'......I fully appreciate there are many many members going through the same or worse...If anyone has any advise at all I would be so so grateful.sorry to be so negative it's just the facts I suppose I now need to face (AGAIN).thanking you all.


  • I really feel for you. I am after having microdisc 4 weeks ago. Before this I had to manage pain for over a year. Last two months were the worst as I was imobilized to bed and had to have 2 im shots cortisone and toradol just to be able to get up for 2 mins to go to toilet. I was desperate. Nothing worked anymore and I was on tremendous amounts of nsaids and pain killers for all that period. All I can say to you is stay positive. You have your family for support and you have to be strong for them as well. I am sorry your hubby isnt being too supportive with this but the truth is there isnt much he can do to make your pain go away. My fiancee had to deal with this for a year and she is already tired of it I can see it in her eyes but I cant blame her really. We pain sufferers at time have unrealistic expectation from our better half :). Sometimes I would get angry with her for most idiotic reasons just because Im in pain. Stay positive friend stay strong. All this will go away eventually. You are in pain for so long now.. My mother in law to be always tells me god gives us all a cross that we can bear. Everyone has a different cross to bear. When my pain gets bad I think of all the people with terminal conditions such as SLA and all the other bad ones I dont even want to mention. Friend, for us there is hope!! I will get better and so will you. I hope you are doing a bit better and at least those meds work and let you rest.
  • OverItAllOOverItAll Posts: 89
    edited 03/24/2015 - 3:23 PM
    But wanted to give you virtual "hugs" ! I too am struggling with chronic pain since 2006, although the daily debilitating pain has been more in the past two years. I don't know how to move forward, but if anyone gets it, it would be the people on these forums. I hope you get some great advice here, sorry that I don't have any.
  • Doug HellDoug Hell Posts: 335
    edited 03/26/2015 - 4:18 AM
    Hi Jo

    I have been dealing with this roller coaster ride for the last 15 months (C5-T2 fusion w/ instrumentation + compression & radiculopathy) and I too am still not ready for a return to work. I am in my 40's as well. I find that heat, aqua therapy, walking, tens machine and small doses of narcotics (my choice) are the answer to my management.

    In recent months, believe it or not, things have improved on a pain level. Do NOT ever lose hope. Sometimes it's all we have. I too have held hands with lonely and it has often been my friend. Unfortunately, we are riding this roller coaster ride to recovery and the sky is the limit for what may or may not transpire.

    Don't lose hope. Keep the faith. Do your best to deflect when feeling low/down about your situation. Believe it or not, the mental aspect of your recovery plays a huge factor with the physical aspect. Don't cheat yourself out of living. Do what makes you happy, even if you don't feel like doing it; even if you are limited. This is key if you want to stay healthy mentally. And don't forget that today is what counts. In the moment is what matters. Don't overwhelm yourself with the hardships of yesterday and/or what tomorrow may bring. Any person can take on the BS of just one day; one moment. :)

    So I offer you hope on your journey. There isn't anything better or more valuable. In the end, it's up to all of us. The reason to consider life and what's of value is to make sure you're not missing out. Seize the day. What's important to you? What do you care about ? What matters? Pursue that; forget the rest.

    Doug Hell
    Spine-Health Moderator
    Realize that FEAR is our worst enemy. Get up & get out in that stormy weather of the real world & kick fear in the teeth. Stare at it dead in the eyes & walk right through it into the storm; because once you're wet, you won’t fear the rain anymore
  • Doug Hell you couldn't be more right! That is te right attitude. You made me get up of my bed even if I'm in pain and had no intention getting up!
    JO JO take thia guys word. It will get better and we need to stay positive. Feeling sorry for ourselves only makes us feeling more miserable than we really are.
    Your battle is finding the right type of meds for your pain. Different solutions for different people. For me morphine never worked but instead it did dexketoprofen which is a lame pill against headaches. But for me it did the job and I was in constant pain.
    What I'm saying friend is that you have to fight for your happiness and well being. Never stop fighting and believing you will get better.
    Many Hugs for everyone here.
  • clwinbecclwinbe Posts: 30
    edited 03/25/2015 - 12:18 PM
    I have been in the pain game for 18 years. For 8 years, it was a bloody damn nightmare. I bought a lovely Ruger 44 mag to self medicate, but I stopped and re-grouped. After five plus pain clinics, I ended up installing an intrathecal pump. They place a small pump in your stomach, then thread a catheter into you spinal fluid. Instead of the huge volume of oral medication that never worked, I am now treated with 5000 micrograms with the ability to bolus and additional 2700 every six hours.

    The next big life changer was a heated therapy pool. I go into a 90 degree pool and exercise. All of the stress is off my joints. The more I move, the more pain control I have.

    My life will never change much, but it's enough. I am out of bed more. My back continues to degrade but I will take things as they come. It can get better. Not perfect, but better.
  • irulegodirulegod IndiaPosts: 10
    edited 03/25/2015 - 1:44 PM
    All I can say is tht I can understand the level of pain you are going through and the worse pain is the thought of Living with this pain for how uncertain time? But always remember things will get better...your body is the best doctor of itself...I dont Have much knowledge but try to sleep in a position whr the pain is bearable Nd stay in tht position for atleast 2 days...in my case it Helped me a lot...i cudnt evn get to the loo so I tried it...if you feel ny pain during tht jus discontinue...i was tilted towards left so I slept on left side bcos spine takes a curvE towards tHt side only...jist concentrate towards keeping your spine in ceNter....plz dont try hard to do anything if it increases the pain nd consult your doctor over sleeping position....my pain increases whn I lie down on my back...evry case is different...but sleeping pOsition cud do miracles ...you will be better soon dont worry just keep goin. :)
  • I've been living with chronic back pain and neck pain since 2009. On Sept 8th 2014, I had spinal fusion L3-S1, with non magnetic titanium hardware, hoping and praying that this would help reduce some of my pain. Here I am 6 months later, and my pain is actually worse than before my surgery. But my spine is stable, but I can't sleep, can't walk very far, can't stand for very long, can barely wash my feet without a shower brush, putting on my shoes is a pain, and most of the time my Brother has to tie them for me. I also just found out that my neck pain is caused from 2 bulging discs possibly from a cycling accident a few years ago riding for MS, and severe Arthritis. I'm 58 years old, and I don't know how the Doctors can expect me to return to work being a triple level fusion. I can barely lift anything, and my job requires me to lift 50-60 pounds. I think their expectations are way to high, and my short term disability won't last forever. I live on pain pills, pain patches, I have leg pains at night which drive me nuts. I've had nerve burns, multiple spinal injections in my lower back and neck, and tried just about every pill you can think of to block nerve pain with no relief. I watched my Mother suffer for 20 years after having 3 spine operations for severe scoliosis. Now I understand what she was feeling first hand. I'm trying to get Disability, and I'm finding out that I have to go through a lot of crap. Why does our Government make it so difficult for tax paying Americans to get Disability. Why should I have to hire a lawyer to get me a benefit that I've payed my taxes for. I wish there was a magic pill that we could all take to end this cycle on constant pain. Please forgive my ranting and long post.
    David H.
  • Maybe if you are feeling this bad mentally and emotionally you should consider counseling from someone who deals with people with chronic pain. Maybe your doctor can recommend someone. Its nothing bad but it can make a difference in your mental wellbeing. Looking at being in pain for the long term is frustrating, I know. I am at 4 yrs. of dealing with pain and I am 6 months post surgery with little to no improvement in my daily life. I am also the sole breadwinner in the family. I have been back to work for 3 months. The days are long and painful but I have no other option. I take a boatload of prescription pain killers every day. I know that this is probably never going to go away but I have accepted it. I still have bad days that make me mad at the world. Hang in there
    Tracie C
  • I just wanted to say how sorry I am for your pain and I started bawling when I read your post because I have been in chronic pain since an accident in 2002 so I can REALLY relate! My immediate reaction ( no offense) to a few people who responded who haven't been battling pain as long was extreme rage! They don't get it yet but they will- it's easy to have hope the first few years. I get so mad when people say you need to get out more when they don;t know how hard it is just to get ready. I have been searching the internet even today looking for a new spine Dr .After 4 hard back surgeries I am no better and now the top of my back is hurting. i know so well the look you get from your spouse- mine is just existing with me. We all just want our old life back don't we. I wish my grandchildren had known the old me. I was fun- I wasn't doped up and now fat on top of it all.Sometimes I guess it's just good to get it off of our chest. Yes, it would be worse if we had a terminal illness but that doesn't mean we can't be mad as hell for the life we are missing. Sorry, I may have just made your day worse. Your sister in pain!!
  • melto9 said:
    I just wanted to say how sorry I am for your pain and I started bawling when I read your post because I have been in chronic pain since an accident in 2002 so I can REALLY relate! My immediate reaction ( no offense) to a few people who responded who haven't been battling pain as long was extreme rage! They don't get it yet but they will- it's easy to have hope the first few years. I get so mad when people say you need to get out more when they don;t know how hard it is just to get ready. I have been searching the internet even today looking for a new spine Dr .After 4 hard back surgeries I am no better and now the top of my back is hurting. i know so well the look you get from your spouse- mine is just existing with me. We all just want our old life back don't we. I wish my grandchildren had known the old me. I was fun- I wasn't doped up and now fat on top of it all.Sometimes I guess it's just good to get it off of our chest. Yes, it would be worse if we had a terminal illness but that doesn't mean we can't be mad as hell for the life we are missing. Sorry, I may have just made your day worse. Your sister in pain!!

    The people who have been battling pain usually go through the hardest part of that pain in the beginning. To state that you are upset by specific comments based on the fact that they haven't been fighting pain for as long as you have is absolutely absurd. How do you know how long anyone has been battling pain and what dictates who is worse off than others? Spreading around pain isn't going to help anyone here. There is always a choice and there are always options, despite having physical limitations. If you can't get dressed, have someone help you or take a bit longer to do so yourself. If you can't walk very long, take a break. That doesn't mean you just give up and do nothing because it is hard. The mental aspect will often dictate where you end up years down the road, especially when dealing with chronic pain. If you have given up, please don't come here to encourage everyone else to follow suit. It's when things get worse that you must not quit and never deprive someone of hope, it may be all they have.

    You certainly can be angry as hell for the life you are missing, but what good will that do? Your last sentence is proof that you know better. If you kill all the caterpillars, don't complain that there are no butterflies.

    Doug Hell
    Spine-Health Moderator
    Realize that FEAR is our worst enemy. Get up & get out in that stormy weather of the real world & kick fear in the teeth. Stare at it dead in the eyes & walk right through it into the storm; because once you're wet, you won’t fear the rain anymore
  • A gratitude list and serving others (even if its just a phone call) can help get me get out of a funk. We are all here for a purpose and my goal is to live without fear.
  • JoJo I watched my husband go to work in so much pain. I would help him put on his clothes and boots. And it seemed I had to help him fight these stubborn doctors about his pain. Finally he was put on SSD and he received a pain pump. His doctor said he was really to young for a pain pump. He was 42. But I seen a change in his quality of life. He became more active and seemed to be able to enjoy his day more. He could not get relief from his oral meds. It is hard to find a doctor that wants to take him though. So we travel. But you know what it is worth it to know that he is able to get out of bed. He still has pain but he is happier. I have hope that I am going to get to a point where I can enjoy my day with my husband again. I love reading everyone's post. I hear my life in a lot of these post. We all have one thing in common, pain. And I now find myself getting on here and I forget my pain feeling bad for others. This site has helped me feel like I am not so alone. Thank goodness I found this forum. I am glad you have too JoJo. Oh by the way my husband has failed back syndrome, DDD. He had 7 back surgeries. He has scar tissue on nerve. No more surgery because he will just grow more scar tissue.
  • bri66bbri66 Posts: 12
    edited 04/02/2015 - 7:40 AM
    I know what they did to me. I would have seizure like shakes and toss my cookies uncontrollably with them. I couldn't tell you if I have them anymore because I shake and get nauseated everyday with my neck pain. I don't get a break from my headaches at all now. I feel everyone suffering pain knows from where I speak when I talk about my pain. I can't dress myself quickly. It takes me a while to shower. I'm very tired and in pain before I ever get out of the shower. Everything has gotten so much harder and even seems scary to me at times. Stepping out of the tub is very hard. I have almost fell out or in the tub several times. I trip over my own feet now. I know that in this forum many have the same realization. Lives change so much with any kind of chronic pain. I know of children suffering from unimaginable pain. I empathize with anyone suffering. I hope to learn from what I read on the web sites shared and from you all who share what you have found to work for your pain. I know I was a much happier person before my auto accident. I dare say everyone was happier and probably more fun to be around before the pain. I'm guessing that's why level 10 of the pain chart is a sad face. I look forward to reading everyone's post . It keeps my brain from reminding me of my constant headache, back pain,foot pain, arm pain, leg pain and my neck throbbing constantly. I catch myself clinching my teeth with my pain especially while I just put it on paper. I like the distraction I get from reading and the posting. I am going to have to stop with the frequent postings. But I have enjoyed every post read. I have learned from this spine-health forum. Thanks for the shared web pages and for reading my post. I hope for low pain levels for everone.
  • dilaurodilauro ConnecticutPosts: 9,842
    for your medical safety.
    When pain level even starts to approach a 9, start thinking about going to the ER.
    At trued medical levels of 9 and 10, you are not capable of talking care of yourself, nor functioning as normal
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • DanielCDanielC Posts: 155
    edited 04/06/2015 - 6:41 AM

    'Melto9' I have to say I am so disappointed with your comment. There was no need for it really. This isn't a rant blog or a place where you can pick on your fellow sufferers 'blaming' them that they don't suffer enough. Chin up and start being more positive. Will it do you any good? Who knows? Maybe. Will it do you bad? Definitely NOT! So stop coming here whining and putting people down.
    I am after a microdiscectomy after a year of tremendous suffering. Now fter 6 weeks I still hurt and shit my pants thinking of my next RMI but I stay positive eat chocolate and watch some comedies. Today I watched burn after reading :) I recomend it to you too.
    Take care now and try to calm down it will do you good. Hope you feel better today.

  • I've lost count of the number of times I have been to this post ,since 1st posting it, and have read,digested & reread everyones kind words of encouragement.However It's taken me til now (over 2 wks) to actually be able to reply.Primarily because everytime I reread ur comments I break down & give into the tears & secondly because I did not want to be all doom & gloom but BELIEVE ME when I say I am so incredibly grateful 4 the support & encouragement.There are 2 many responses to address everyone individually so please don't b offended if I don't mention everyone specifically-I have valued every response.
    Im afraid I am still in the same place I was 2 weeks ago but I'm hanging in there trying not to give up hope.Everyones pain is different but everyone's pain journey is hell regardless of how long they've had pain for or high or low they are on the pain scale.It's actually been my saviour this last yr or so (I was reading posts long before I joined myself) to realise I am not alone & although the journey is like a rollercoaster there is always hope.......I AM NOT GIVING UP & LETTING PAIN DESTROY MY LIFE.Now I've said it i just gotta believe & act on those words.....
    Through all my own yrs of pain including up to this very day I have ' faced fear & attempted to kick it in the face (thanks for words of wisdom Doug Hell) but I've just hit my brick wall & that is why i'm appealing for support (& getting it-thank u so much everyone).I know with these kind,encouraging words I can rise from this latest setback......(i'm not sure I believe this fully but even saying the positive words as opposed to 'poor me negativity' has gotta help)

  • Daniel you are right-feeling sorry for ourselves does result in feeling more miserable & fighting for happiness is far more beneficial.Occasionaly (not as often as yrs ago tankgod -despite being in more pain now) I do allow myself a spell of crying & let the emotions out.This may not sound like fighting talk but it does release pent-up emotion that we pain sufferers have stored away-I do make sure it's not infront of my 9 & 7yr olds or hubbie & once I've suitably calmed down it's the next phase of 'onwards & upwards' & no dwelling on negativity. RTCONANT1 thanks 4 the advise re counselling -I have actually had a good few sessions with a pain counseller over the last couple of yrs.For me it wasn't the total answer but I would certainly encourage anyone to give it a try.Anything at all that may help is worth it.We both found that we had come as far as we could go but he did make me realise some important coping mechanisms & even practical advise re ' taking baby steps', realising my limitations & very importantly-DELEGATION....
    Bri66- thank u 4 kind words--u & ur husband sound like you have both been through the mill-sorry to hear this-but it's great to hear your upbeat attitude-I will aim to follow suit.Continued happiness with as little pain as possible to u both.....readyforchange you are so right-doing small good deeds etc can make u feel good & hence release happy endorphins & reduce pain.Okay so im still out ill from work but on the plus side I am here every day for my beautiful children (sorry to sound like a boasting mummy but they are my life & I try to spend as many happy moments with them as possible.Whenever things get really bad I ground myself by reminding myself that I have my fabulous kiddies & a cuddle from them is better than any painkiller or antidepressant).Also I am so lucky I was able to have them.When I 1st told my 'pain consultant' that I really wanted kids & hence would not take any pain meds during pregnancy-I'll never forget his words (9 yrs ago)- "it's going to be rough but I'll get you through it- don't let this pain rob you of the chance of kids" AND BOY was he right....kids aren't 4 everyone but I yearned 4 them.It did increase my spine deterioration but it was worth it AND they are why I keep on fighting to find ways of dealing with our wretched pain.See ! I'm finding positives everywhere....lol.
    Finally last but not least Doug Hell... I find I have much in common with u alright-I loved reading ur messages of encouragement & hope.As u have seen from my posts I am trying so unbelievably hard to keep my head above water but is hard,incredibly hard.But I will keep ur kind, upbeat advise in mind at all times.As Daniel said "your attitude" is infectious so thank u.Carpe Diem is true.As pain sufferers (myself anyway-I don't want to generalise) I tend to find it so unbelievably hard to go places,meets friends etc etc.Obviously the pain is the major factor but psychologically too I find pain tends to lead you into '' on-going hibernation''--- most times it's just a matter of increasing meds (appropriatly of course) & getting out there.Since I read ur reply a couple of wks ago I have been trying to put it into action & get out & about more (within my limitations).I am still walking as much as humanly possible to keep spine active so I have now started a small walking group with friends.Of course they know my limitations but there's no pressure on how fast/far we go-each to their own.It has been great-given me a small boost,lots of laughs & exercise.Thanks for that Doug. Finally -and I mean it this time- I took heart from the fact that u are 15mths post op & have just noticed an improvement "in recent months"---now that does give me hope.My spine dr had said a couple of wks ago that ,in my case ,I have probably recovered as much as I'm going to with regards to pain.BUT if u are seeing an improvement/pain reduction after 15 mths then this could also be my scenario too....lets hope..
    Sorry for such long messages guys-once I get started it's such a relief to be able to talk that I get carried away.BUT I have finally got to the end of this post without being teary eyed- on the contrary I actually feel hopeful & like there's a huge weight been lifted from my chest-- You really don't know what this site & you fellow comrades mean to me.I wish everyone well with all my heart.
  • SavageSavage United StatesPosts: 5,427
    Thanks for sharing your ups and downs of this new life of chronic pain management.
    I understand many people very positive..and thankfully that is where in their journey now.
    It's not a matter of painful years that determine our attitudes..acceptance..anger at the new situation of our life.
    Everyone is so individual and so different in every respect.

    I found I was not alone to have times of feeling defeated...esp at the beginning of adjusting to my new body. Please know Im not saying you are depressed...crying occasionally doesn't mean depression.....but for myself, struggled with depression and the pain was quite a transition for me. I'm much better now in that regard :)

    Financial matters are always a consideration whether we are well or not...so why not more so with disability..or pain?
    Someone commented on something like ..why to get attorney for what is deserved. I'm on disability..since 2009. Disability attorneys do not charge you unless you win and from what I know..almost impossible to win without attorney. I won within 6months and my attorney made no money from my case. I'm in the states...may be different elsewhere, of course. But the original writer...I not negative on. That's where he is right now..and often times frustrating to have to deal with these important issues while in pain.....speaking for myself..not the original writer.

    Also wanted to say that not unusual to receive treatment and get back to our life..and then to realize this may be as good as it gets. For me I finally accepted the new me as a constant companion who at times needed more care and understanding than at other times. I had to stop being so hard on myself for what I could no longer do and focus on caring for myself as I would a loved one. Sometimes we are more kind and patient to others than to ourselves...sometimes thinking if this was my child and painful situation, how would I respond.

    In staying positive, always a good thing, please remember ...like what Ron said about your pain level and when you need more medical help. Do take care and we are here for your journey...up, down....curves in the road. You're not alone!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • Jo jo I'm glad you find comfort in reading out posts here. You talked about crying and let it all out. That is absolutely fine. I'm a 33 yo male and boy I cried like a baby for a good few times when I felt all the negativity storing up. After that I felt better drying my tears and starting again with a positive attitude. At the moment after 6 weeks from my surgery I still have outbreaks of pain but they are very manageable even without pills. I am so grateful to the surgeon and to god for that. I still need a positive attitude to get through rough times when I'm in pain. Positivity helps my friend!! Have a laugh sometimes, crack a joke, make fun of someone, watch good comedies, think of us that we support you. I myself have been here regularly to see if you replied and I am glad you did. Keep as positive as you can and cry if you feel like crying. That helped me relieve all the stress accumulated because of the pain. Stay as mobile and active as possible. There will come the time when you will feel better. Hang in there we all love you and support you here. Many hugs
  • Cheers guys..as always I find comfort in reading your replies.I really don't have anything new to add.Pain sucks unbelievably so but today the sun is shining, birds are singing & summer is coming so a lot to be thankful for. Its nice finally to be able to go for my walks in the sunshine instead of the rain (here in Ireland we get our fair share of rain-lol). xxx
  • Jo jo Ireland is beautiful even with the rain. I used to live in Dublin for nearly 10 years. I had some of the best time of my life there. In 2012 I came back to Italy :). If you are from Dublin you should go to Phoenix park. I used to walk there very often. So relaxing especially in the mornings :). I miss Ireland and can't wait to be back to have a proper pint of Guinness !! Take care and hope your day got a bit better.
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