Guest blogs
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Empowering and supporting people affected by chronic pain

ncpsncps Member Posts: 30 Courageous
edited August 2019 in Guest blogs

My name is Louise, I run Northamptonshire Chronic Pain Support, I support people affected by chronic pain, including family members as well as carers. I set up NCPS in January 2018 due to there being a lack of support for people who have undiagnosed pain in Northamptonshire. There are a few groups for people who have been diagnosed with things like arthritis and fibromyalgia but it is possible to have pain that affects your life and no medical reason. There is a lot of research into this at the moment but in the meantime people’s lives are on hold as they feel judge, unsupported and scared for the future.

I have had chronic pain for a number of years, I found I was stuck in a cycle of grief, for the person I used to be and the life I used to have. Nothing on the outside has changed but inside I felt I was facing a constant battle both physically and mentally.

I could no longer do the simple things we all take for granted such as getting out of bed, washing, going to the toilet. Can you imagine going from your independent self, so being able to just get up out of bed, get washed and dressed, have breakfast, go to work and come home. To suddenly not being able to the energy to get out of bed, every joint hurting and physically stiff?

I faced a constant battle of guilt over things, like not being able to work but also being at home all day unable to cook a meal or even do a little housework, my partner was extremely understanding but it didn’t matter what they said I felt a waste of time, a mess and impossible to love, they had been at work all day and I had done nothing.

​I slowly slipped away from living into existing, with ease and without really even knowing it. I became isolated and stuck in a rut that, if I’m honest, I wasn’t even trying to get out of as I thought that is what life had to be like, That I had no option but to ‘suffer’ from chronic pain for the rest of my life.


I was left emptied of hope and filled with pills, left to get on with it. I was not offered any emotional support and I was never asked my opinion on anything to do with my treatment.

​For 2 years, I had allowed the pain to rob me of my friends and hobbies, but even worse I became so consumed by the pain that I had forgotten all about loving my partner. Now I look back I realise the worst thing was, I missed out on valuable time with the people I loved and this hit me very hard when I had a death in the family.

​​I made the choice to change my outlook of my situation, nothing has changed physically, if anything I am weaker, however I have managed to combat the thoughts that constantly caused me to doubt my ability I have taken time to understand and accept myself for the person I am now, not who I used to be and I have worked on becoming grateful for what I have and that right now that is all that I need.

I had been attending a small group monthly that was held by the charity away with pain. In January 2018 I relaunched these meetings under the heading of Northamptonshire chronic pain support (NCPS). I had found that just being in a room with other people who had chronic pain really helped. It is so powerful, to know you are not alone, not being judged and that your pain is valid.


I now hold meetings all over Northants, I use my experience of chronic pain and the experience of others to help people who do not have chronic pain understand what it is like to live with chronic pain. I support the carers who do a fantastic but sadly go unnoticed, they need support, and they are affected just as much by chronic pain as the person who has it. I use my knowledge of both cognitive behaviour therapy (CBT) and living in a mindful way to delivered in a positive way that you can have a life with chronic pain and you do not have to ‘suffer’ from it.

I hold a monthly meeting in Kettering Corn Market Hall every first Thursday of the month between 7-9pm. Anyone regardless of diagnosis is welcome to make contact or indeed someone who supports people with chronic pain. I have also created a Facebook page which I try to keep this site full of positive and helpful information about things that help such as equipment, local social events and also factual information about chronic pain.


For further information please contact me on [email protected] or through the website www.ncpsuk.co.uk.

Do you live with chronic pain? Are you in touch with any groups yourself? Have you found support groups to be useful?

Lou

Northants chronic pain support

www.ncpsuk.com


Replies

  • Adrian_ScopeAdrian_Scope Administrator Posts: 7,597 Scope community team
    This is a brilliant Louise and I'm really glad you're able to pass on what helped you to others in similar situations.
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • DebbieNDebbieN Member Posts: 11 Listener
    I go to a support group at meerbrook in Staffordshire.its an open group I find it very helpful and friendly when people with chronic pain /CFS,/ME
    And alot more give advice and support I feel I'm not the only one.
  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    I used to have neuropathic pain. This makes me feel less alone. Thanks! 
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,679 Scope community team
    A great piece Louise! It sounds like the work you do will make a huge difference!
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
  • mikeymikemikeymike Member Posts: 20 Courageous
    I have suffered with the lesser known disease complex regional pain syndrome for 17 yrs now and unable to work again and still find the pain so hard to live with, I used to see a pain therapist when I lived in devon but very little help in the part of London that I live in now, it doesn't help suffering from PTSD as well from other things that have occurred, but it is great to see others getting the help they need.
  • WaylayWaylay Member Posts: 892 Pioneering
    I have chronic pain and C-PTSD, @mikeymike. I hear you. I've found connecting with others online helpful.
  • WaylayWaylay Member Posts: 892 Pioneering
    @ncps Thanks Louise! I'll look around here again....
  • Tammyjane33Tammyjane33 Member, Community champion Posts: 642 Pioneering
    This is a subject that is very close to my heart. 
    I myself have a rare disease and suffer with chronic pain so i know how difficult life can be. 
    Life can be very hard in general without added pressures including pain to deal with. 
    Please remember to talk as much as you can. You are not alone although it can feel like that at times. 
  • Tammyjane33Tammyjane33 Member, Community champion Posts: 642 Pioneering
    @ncps thank you for sharing. This is an amazing post and its great what you are doing to help others. 
  • jennifer01jennifer01 Member Posts: 1 Listener
    Hi i live in deptford london id love to join a support group in my area. Ihave a brain problem .epilepsy chronic back pain which im in agony each time i walk . Migraines underactive thyroid .i m bringing up my grandaughter whom is 15 and its very hard x 
  • AlattherapyAlattherapy Member Posts: 6 Listener
    I suffered an accident at work in 1986, and due to be mis -diagnosed as there was not scanning available at that time , I was unable to work for 14 months and had to resign from nursing, I suffered chronic pain for some considerable time , and parasthesia in my right leg and left foot and regular spasm in my right leg. My excellent GP  tried many different medications some helped some did not. After some considerable time I had a back scan and saw a neuro surgeon who told me I had this back condition for such a long time and nothing could be done surgery wise, if I accepted surgery there was a high risk I could end up in a wheel chair. With my GP 's support I fought to attend a pain management course, and after a year I was accepted on a course, this proved to be very helpful indeed, the pain consultant suggested I tried pain patches these proved successful, and I had procedures carried out on my legs and  it was suggested Gabapentin may help my neuropathic pain, it did . Like all analgesics they run their course so you need to increase the dose or try something else. I had a theory about my medication which I discussed with the pain consultant and he agreed, I take one pain killer and if my pain is still unbearable I can take another in 2 hours, instead of taking 2 tablets and having to wait 4 hours before repeating them. For me this regime  in addition to my pain patches works well for me. I also pace myself in all the tasks I carry out and for may years during my nursing career I have practices Stress Managment Therapy with patients which consists of Deep Breathing Excercises (the 10/10 method) and relaxation to Pan Pipes Music and sometimes some Aromatherapy massage. This all works extremely well for me to help relieve my chronic pain in conjunction with my pain patches and analgesia. I was also in a support group called WING, work injured nurses group, this was very helpful in the early days. Also after Pain Management we could access the physiotherapist if need be, without having to be referred through my GP each time. Alan Bainbridge.
  • croxiecroxie Member Posts: 4 Listener
    I know what you mean about grieving about the person you use to be. That is what I am doing right now. Feel I have lost a piece of me.
  • ncpsncps Member Posts: 30 Courageous
    Thank you all for your comments, I really have found that setting up NCPS has turned my life around. I have recently been accepted by the open doors project, this is a pilot scheme being run by the government in which community groups can use empty shop space for free. So every week on a Friday from 1-6pm we are based in Kettering town centre, in Northamptonshire. Anyone is welcome at any of our meetings so if you are near Northamptonshire please get in contact on [email protected] and we can give you a list of regular meetings you can attend.

    Lou

    Northants chronic pain support

    www.ncpsuk.com


Sign in or join us to comment.