Hello Good Folks, what a month it is, why is it always August and the moon has been full and powerful this month, bringing things to a head. Well this time it is my turn to feel the hand of austerity from this so-called government who have to date killed of over 10,600 sick and disabled people through their cruel and draconian welfare reforms and punishing the sick and disabled, but thats another story I will share later. But here and now the anxiety is kicking in more than usual, with receiving a letter from the dreaded ATOS so-called IT firm who call themselves ‘Heathcare Professionals’ notifying me that my Long-Term Incapacity Benefit is changing to ESA. Which has included the form ESA50 1/13 which has to be completed and sent by 2nd Semptember 2013. And I thought the DLA form was a nightmare to complete, how wrong was I indeed, so much so, that they have completely revamped and changed the form and some of the questions I would question, as an ex-carer worker within the Winchester & Eastleigh NHS Healthcare Trust for 7 years before my Lumbar disc and Sciatic nerve went and took me down with it after 5x nights and two 14hrs Day shifts straight, in October 2006. And thats when it all started, then after 4 years later of intensive and extensive physio and hydro therapy, traction, an epidural and changes pain management course with my physiotherapist, psychologist, occupational therapist.
When in May 2010 they found that after severe to chronic symptons and x-rays, nerve conduction test, MRI and CT SCAN, and two C5/6 and C6 Root Nerve Blocks Injections which were diagnostic, pain relief, pre-op guidance and management. It has now come at long last after everything done todate to try to make this better. My Neurosurgeon has finally sgreed to place me on his waiting list for a major operation to remove my C6 disc in my cervical spine in my neck. The operation is called an ACDF with Graft which is an Anterior Cervical Discectomy Fusion eith Graft. And is n8t pretty and for anyone habing this operation, it is extremely painful, but, the job needs to be done, and through all the ladies I have especially followed and sourced following their ACDF Journey & Experiences through this long journey.
But what I don’t need is the DWP giving with one hand the DLA I desperately need for costs of alot of my non-clinical aids and help that I need that the Social Services won’t provide anylonger due to the likes of MR IDS, GEORGE OSBOURNE, and PM MR CAMERON, who in a nutshell don’t give ATOS, excuse the pun, but is the truth of the matter. And this dreaded form ESA50 which has no intention of changing one benefit at all, as the questions are specifically geared up to strip you off your sickness and disability benefits and force you back into work, when you are clearly unable to do any kind of work, due to chronic illness or disability, backed up by your GP, Consultants, Specialists, Physio and Occupational therapists. So where does one start indeed?
Firstly, the stress and anxiety caused by this is immense and the fear that any decision that is made out your control could hinder the very operation I need to relieve the chronic pain in my cervical and lumbar spine. As living with chronic pain comes mental health problems which go hand in hand and do not help the natural healing of the body and causes significant chronic pain, which makes to the pain so much worse.
Josh has found letters written to MR A. NADAR SEPAHI, and earlier entrites in my previous pain journal in 2011, that I rewtiting and addressed to my Pain Journal.
Wednesday 18th April 2011. (Winchester)
Dear Pain Jourmal,
It is now April already, my last entry to my Pain Jourmal was in February 2012. No change really since then, other from increasing nerve pain in my neck, and down my left arn and hand, being ring finger and little finger respectively.
My to have a qood C4/5 C5 still chronic pain and nerve pain and the swelling. I have had to see my GP Dr Anna Sayeda to increase my Amitriptyline and go back on the Fentanyl patches 12 micrograms and still No follow up appointment. Re: Injections on the 19th October 2011. After ringing Alexandra on the 13th February 2011, after enquiring after a follow up appointment which should have been already. Which has still not come through and how much longer do I have to wait and how much pain do I have to endure is worsening day by day, and the physio is not helping me at all. As I was told by my physio therapists who told me, that the only three exercises they can give me to build up my core muscles in my neck. Which I do on a daily basis, as pain allows.
Are the only excersises they can give me, as basically a medical and surgical issue and that no physio can help until after the operation ACDF With Graft. The ohysio is
Is not going to help much at all. My mood is Low with very high anxiety, as the extreme changes, the cold and damp weather will affect my cervical spine and severe nerve damage, with 7ncreasing pain further, unable to sleep and when I do mamage to sleep, I have nightmares and hallucinations due to the very unhappy drug I am having to take, especially due to the increased meds, and especially Amitriptyline that needs to be reviewded re addressed by my GP or Consultant.
After ringing ringing Alexandra yet all I seem to do is to chase, chase and chase. GRRRRRR.
Hopefully, let something to be done as I also have severe for sciatica which has flared up over the last week or two ago, which does not help at all.
Monday 30th January 2011. (Phone call to Alexandra MR A. NADAR SEPAHI Secretary)
Dear Pian Journal, and to Mr Sepahi,
I am writing as I have had to ring Alexandra your secretary today to follw up and up date you to and review my circumstances with my Lower Back, Lumbar Discs, Sciatica and Cervical Spine. Since my Nerve Root Injection I had on the 17th October 2011 at Southampton Neurological Outpatients (Radiologists) Radiology Department. Where I received and underwent Two Nerve Root Block Injections Left C5/6. When I was given 1.5mls Marcaine. 0.5% and 40mg Kenalog inserted. Puncturesite clean and dry, no evidence of Heamaoma. Observation, satisfactory. Bedrest 1 hour plus hospital transport, my freind came with me, thank the Lord, AMEN.
Radiology Consultant Dr Sampson.
Managemant Plan, Recomendation and self care Instructions:
Rest for remainerof the day, mo heavy lifting, strenuous exercise or driving for 48hours. Local anathethic will wear off over 48 hours and steroid may take up to 2/3 weeks to be fully effective, * Keep A Pain Dairy)* .
Okay, the influjection worked for a short time as when the anesthesia wore off, it worked for a while, for approximately 5 weeks or so. Then I started to get nerve pain back on my neck C5/6 and down my left forearm, having partial sensations in my fongers and forearm and weakness. I started getting nerve pain mid- November to late November (approx: 5 weeks from injection). I saw my GP Dr Anna Sayeda on 13th December 2011 at 10.00am Winchester. To let her know that I had the injections. We discussed my Analgesia and we dicided that we would start to wean me off the Fentanyl patches. (With two boxes og 12 and 5 x 25micrhram patches remaining) to use if required.
25th & 26th November 2011. Derby.
After I fell out of bed at a freinds place in Derby, whichjolted my neck badly and loeer back discs. I had to go to Derby A&E, this was in the early hours of 26th November (fell out of bed early hours 25th November at 6am. I was taken to the ‘Walk in Centre’, Alvaston, and further reffered to A& E Derby, so I was taken over to A&E later that evening about 21.30hrs to 3am). I was given 5mls Diamorphine, had a collar placed around my neck and taken to X-RAY and had 5 x’rays. Disnosis was that I had badly jolted my neck and lower back and discs, and told to rest and pain relief. No further damage done, as far as I knew. Thank the LORD, AMEN
Since then chronic nerve pain in my neck C5/6 was very tender and swollen, had to repeat prescription for Fentanyl patches when in Winchester, for chronic lower back pain and cervical spine pain. Radiating when I try to put head back and nerve pain down my forearm and fingers (little finger and ring finger). I used all remaining already prescribed Fentanyl patches upto 1at week of January). I travelled back by coach to Winchester, bad and rough journey and had to dose myself up and had to report the drivers. Caused severe pain chronic pain for a week plus when I got back and bad sciatica. Rested when with heat teatment, rest and sleep, with Heavy Analgesia.
25th December 2011.
I fell out of bed again, this time my own bed at home in Winchester while my freind was staying at mine for the Christmas holiday. I rang NHS Direct, just rested and pain relief. These darn dreams of mine and Amitriptyline!! They are too vivid and physical movement in dreams. Okay, so next.. Still no let up with Chronic Nerve Pain all down my left side, with lower back badly bruised discs and cervical discs sore, tender and swelling. Pain increasing on every movement slowing because of pain and becoming ever more fatihued and low with Chronic pain nerve pain. 😦
The second time I fell out of ned was approximately 2/3 weeks later whem my friend who stayed at mine the last time whixh mist have been 22nd to 28th December 2011. Between Christmas and New Year before we both went baxk to Derby. It was Christamas night I fell out of bed, or should I say rolled out of bed about 2.1/2 feet to 3 foot drop lixkily softened landing as I woke up some hours afyer landing akwardly between the bed qnd wardrobe with my head and neck on the chair with my baxk twisted qkwardly. I had to be taken to A&E next night, early hours. The paramedics were called and an Ambulance, another collar! I remember because I fell our of bed and landed so akwardly between bed and wardrobe, I felt pain when I came to, woke out of dreamstate and woke up my friend.
When the ambulance crew didn’t put around my neck, they wheeled me im a chair into A&E from the ambulance, I was very worried by then, and concerned with falling so many times and causing more damage to discs God Bless.
However, the doc’s on A&E weren’t happy at the ambulance crew for not putting a collar around my neck when bringing me in. Thankfully got back home safely early hours about 1 to 2am. Back to bed amd complete rest. After further x-rays, Diamorphine. Bedrest and Analgesia.
December/Jan 2011 Derby.
Since then I have experienced further and constant chronic Nerve pain and swelling in my neck at C5/6, and Sciatica worsening and lumbar disc pain. With Nerve pain from head, neck, left arm, down left leg from lumbar sciatica.
12th to 20th January 2012 My last stay in Derby.
The third and forth time I fell put of bed at my friends place, aboit 3foot fall but was thankfully cusioned by the duvet. I didn’t call the NHS Direct, just rested and heavy meds and analgesia. But the nerve pain became worse still and increasing.still. About two weeks before traveling back to Winchester. Had to see a doctor at Charwood due to ‘Shingles’. I was worried as I had never had this before and it was the extreme stress which had caused this for sure. I had to amend my coach to return back home from the 12th January 2012 to 20th January due to the shingles treatment and chronic nerve pain and lower pain and dics from head, neck down arm, sciaticdown left leg.
Returned 20th Jamuary 2012.
To date, I arrived back in Winchester on 20th Janiary In full sciatic flare up. Since then the weather has turned cold and freezing at night. With constant chronic sciatica down left leg, very jumpy cannot sleep at night, not able to ait, lay for any length of time. Totally dose myself up am on 8 Amitriptyline oer day being night over night. Coupledwith pure nerve pain from my neck C5/C6, radiating when I put my head back attempt to. And down my left arm/forearm with partial sensations in little finger and ring finger, which are painful with nerve pain. The cold is hetting into my nerves and feels like corkscrew going through bone OUCH!! Constant nerve pain score is 6/10 with full analgesia, full doses of all the meds. I rang Alexandra yesterday afternoon. Had an appointment with my GP on Thursday 2nd February at 9.50hrs.
20th January to Tuesday 31st January 2012.
I have relayed all that has happened as above and Alexandra has made note of these experiences that will be put up on Mr Sepahi’s computer or desk for when he gets back from his Convention on the day I get bqck from Doc appointment. So, now I await a follow up appointment, Alexandra did say she had just recieved the results from my Nerve Root Injections.
2nd February 2012 Dr Sayeda Appointment Thursday.
Meanwhile, each day as ot comes. Heat treatment, rest when can have been out to shop to pay bills and wqlk when I can. Yet, still no sleep, RESTLESS, JUMPING LEG, NERVE SCIATIC PAIN. Down arm as well which is proving to be a pain too. I need to get pain inder control more Fentanyl patches required. Using heat, Hot water bottle, bean bag foe neck, Tiher Balm on Neck C5/6, neck shoulders and lower back. Also await physio 7th February. Went to appointment was so hlad to see Dr Sayeda on Thirsday 2nd February, went through summary of pain diary that I have been keeping amd relayed and emphasised to Alexandra. Alex said that she would put a copy of the notes on his desk on the day Mr Sepahi was baxk in hos office being today. And to await a follow ip appointment, as soon as possible.
TO BE CONTINUED….