Memorial Fundraiser for the Robinson-Morgan family

we are hoping to raise funds towards a headstone for our father who on the 7th of July 2023, My family got hit with the bombshell that my Father Martin Morgan had passed away. He went into hospital on the 12th of June and was gone within 23 days due to a malignant Cancer. We didn't know that he had this as the Doctors never advised us of this at any point. A lot what was told was the words Tumour, Benign, Contained, rather than telling that the cancer was malignant, we were only told this 8 weeks after he passed away. Now I know a lot of people say things like ("at least he didn't have to put up a fight") or ("he is at peace now), these words don't actually offer any comfort as he is gone and never coming back. As a family this loss has been nothing short of devastating, and very hard to come to terms with as the empty seat at the table, the father that was my best friend, the man who saw me straight. He was someone's Son, Brother, Father, Grandad, best friend, But most important he was my Mother husband. When he went to hospital we lost his weekly money due to the social worker giving the wrong information which did happen a lot around that time. Without his income we have been trying to stretch the money from week to week and are now trying to raise the funding to get a headstone. We do be worried about Our mum as she has her own health issues to contend with. Please have a read

So it started it off a normal day 07/09/2015 with the only difference been that  had a numb but tingling sensation in the thumb in my right hand, now I didn't think to much of this, however as the day was progressing the tingle numb feeling started to move throughout my hand and as the night I was helping my sister to setup her sons 21st and that is why the date sticks out. The feel of numbness was annoying as the sweat was dripping off my arm, but it was freezing to the touch. Went to bed that night hoping that this would be gone by the next day, but when I tried to get out of bed the next day i was in trouble as was not able to move at all. I had zero feeling throughout my entire body to the touch, but the pain was excruciating all over my body, so we rang the local doctor as my GP was off as it was the weekend and my husband had to more or less carry me from the house to the car from the car to the doctor, who gave me an injection to help ease the pain and also gave me pain medication until i could get into my doctors. Looking back at that time I am sorry that I didn't go straight to the hospital, because I waited to see my GP on the Tuesday as she was not available to see me on the Monday, so off I went and when i was there it turned out I had protruding disc in my neck to which she herself the nurse and other doctor that was there decided to push it back in place, and never even suggested going to the hospital. I was prescribed medication for this and an antibiotic, and if no better make an appointment to see her a week later. This was the start of a long wait to get the correct treatments and the correct doctors as well as going for physio as i was more or less partially paralysed from the neck down. I had to rely a lot at that time from my husband and my children to help with the basic of even getting out of bed. Prior to getting this debilitating pain i was a very active person who loved walking, hiking and exercising and had dropped a whopping 7 stone in 18 months before this happened. 

So this was the start of a long road to getting diagnosed as well as coming up with the correct treatment plan. Everything had a long waiting list of the doctors and physio therapist that i would see over the next 9 years. Firstly I had to get the physio in order to help me get to the point of been able to get some normal function going on with me as when I started to attend them, they advised that I had tennis elbow in my right arm and a cauliflower elbow in my left arm. I had zero feeling to touch to which they believed may have been issues with my nerve endings and or the cartilage in my arms. So this was all guess work with them. I was very big into using homeopathic remedies as never wanted to be dependant on medication for anything. So having to take all the different types of medications was a bummer for me. So I was attending physio every week and they would do different types of tests each week to see if my touch was getting any better as i had dropped a hot kettle water on myself and was not aware of it been hot as could not tell the difference between the 2. I am still like that today were I can't determine if I am hot or cold as sometimes my teeth will be chattering with the cold and my body would be hot to the touch, or the other one were your body is cold to the touch but you feel like your boiling up. It can be very frustrating especially in the cold weather were your sitting in shorts and t-shirt in the middle of winter and because you can't determine what to do this has seen me catching PLEURISY, PNEUMONIA and chronic lung infections as well as the common colds and flu more frequently, like i am here on the 15/04/24 and have just gotten over a bout of PLEURISY, but still have to use an inhaler to help with the breathing as it feels that I still have the infection, I have seen myself getting at least 4 to 5 inhalers a year as well steroids to help with this. So by attending the physio therapist for 2 years and my GP sending information to neurologist, orthopedic specialist, rheumatologist, pain clinic and ENT specialist. This was a long road and if you are in the process of waiting on all departments to figure out were and who you need to go to get help. It took me years of paralyses for days on end, to using 2 crutches to using 1, both or one arm would be in slings to remove the pressure that was been placed on my back. I had a back brace which i still use for bedtime, braces for my elbows and hands. I have foot supports for my feet which are a nuisance but they do reduce the movement at night. I did try the weight blanket but that was of no use to me as the pain was unbearable. I was advised to try CBD oil, This was useless, I was using the heat patches, hot water bottles and the wheat wrap that was my favourite as that was very useful for the upper part of neck as i could just about use my arms and eventually once the correct medication was prescribed I don't need to use that to much now, but I don't lend or throw it out as never know when I would be able to use this. So as you can imagine I would be like a robot in the bed, but my husband was amazing with the help he provided me with in regards to the household and sometimes doing typical things we take for granted from small things like combing your hair to making the dinners. I am not going to lie to people but this was a very tough time for us all in the house as was not able to take part in just every day things.

So it took over 18 months before i got to see the orthopaedic specialist, said that he was not able to understand what was happening and would also refer me to the neurologist to have my nerve ending checked as well as my cartilage in both my spine, arms and legs as he didn't believe it was anything to do with my bones, but wasn't going to rule this out until they done the test for me to see what was going on. He in turn also gave me 2 crutches and a new back brace to use to get moving around when I was fit to. As he did not know how long it was going to take to see any of the other specialist he also put in a request for an MRI, x-ray and CT scan to be carried out of my entire body and in the meantime it was left up to my doctor to come up with a plan of medication to help me out while this was going on as he didn't like the fact that I had no reaction to anything he was doing at that time and i would go back to him once these were done. This took just over another 18 months to take place.

So the next doctor I went to was the neurologist who arranged for me to have a nerve conduction velocity (NCV) and a nerve conduction study (NCS) done, if your not sure what this entails this is were  they will connect to a machine using electrode patches  that will send electrical pulse throughout your body to see if they are able to identify and nerve damage done in any area of the body. Next I had a Discography: this was to check using a special dye that get injected to area that has the pain and then has an x-ray to see if it shows up the affected area. However this didn't help with me so he ordered for me to have a myelogram done to check the nerve compression : this was the dye injected to the spinal area for nerve compression which also led to me having a bone scan done using radioactive material injection into the bloodstream to help identify were the of the bone that wasn't normal. When the results came back mine turned out to be the trapped nerves in the spinal area that in other cases would be able to get an operation in order to remove this nerve, however I was not a candidate for this surgery as mine was to close to the spinal cord and had a risk of becoming quadriplegic from the neck down or paraplegic from the waist down, these were the only 2 options that i was left with at that time. So as the risk was so high at that time we made a decision not to operate and to come up with a pain relief plan as when they carried out further tests they could identify that I also had fibromyalgia from the neck down and polymyalgia from the neck up. Now for those trying to work out the difference between the 2. polymyalgia symptoms are usually pain and stiffness in the shoulders, neck, upper arms and hip area. Flu like symptoms, low grade fevers, weakness and loss of appetite and sometimes weight loss or gain. Also may have the occasional wrist or joint swelling or in my case pain in the head area that feels as if the skin is been stretched to the point you think its about to rip apart or the other one where the face feels really stiff and was having issues with eyes, mouth opening or closing. They also checked me for MS as the numbness, tremors and weakness were some of the symptoms but that test came back that it was not.  As per neurologist this was coming back that there was no cure for fibromyalgia they would be able to treat the pain with a cocktail of medication so i would be able to get back to some sort of life, I would never be the way I was before this happened to me.

So over the years i have had countless MRI, CT's, X-RAYS. In June 23 had an MRI which showed that I have  Cyst in the base of my spine, a tear to left side of my spine in the same area, as well as reduced cartilage in the L4 and L5 disc. So again no one will take on with this for me and since then i had taken a bad fall that saw me in a wheelchair as i was not able to feel anything other than the pain i was in and that was unable to actually move on my own, Eventually i got the use in my body after 12 hours but it was scary, I was then on crutches for the Next 8 Months as was not to walk without them. I then was reduced to 1 crutch to get around, to none, however as anyone with fibro can attest to that is not easy, as you are constantly living in a world of pain and that only gets worse with each flare up as opposed to better.

Rheumatologist took 7 years to see as there was the COVID outbreak that place a backlog of people to see him, However when i did go he was disgusted that I didn't wait to see him 1st as anything he was to do was already been taken care via the GP. He did sent another report to my GP that I definitely had Fibro/polymyalgia. I have to be honest here i don't understand the reason to see him as he never told me anything I didn't know already and thought he was very pompous and had a godlike complex that he was the only one to confirm my diagnoses.

ENT clinic this took 3 years to see again this was due to COVID restrictions in place, By the time I got to this point i was unable to hear anything and had become very reclusive as didn't like going anywhere that would involve a lot of people or noise. So the 1st test they done was In an (ABR) test, electrodes are attached to your head, scalp or earlobes, and you are given headphones to wear. Your brainwave activity is measured in response to sounds of varying intensities. Otoacoustic emissions (OAEs) are sounds generated by vibrations of the hair cells in the cochlea of the inner ear. So after I had the test done along with investigation on what was going on it came back that I had Collapse or retraction of the eardrum results in the skin of the eardrum being “plastered” over the middle ear bones. Cholesteatoma grows around and destroys middle ear structures. Collapse of the eardrum interferes with the normal replacement of skin. Normal skin of the body sheds into the environment. I had also a Perforated eardrum in the right ear with 75% usage and had a busted ear drum and abscess in the left ear with only 25% hearing activity. So they were unable to do anything for this other than the use of hearing aids over time as I was 39 at the time and had the ear canal of someone in there 80s and would only become worse over time. I did get fitted with hearing aids and they were great when I started to use them, however was not able to use them for to long as my canal just keeps getting smaller and the had started to rip the skin in the area of the ear and as we learn with fibromyalgia there is knock on effect for cuts and bruises that we don't heal like others, so i have not been able to use the hearing aids for a couple of years now. So my new motto when I go out and about if you want to talk to me you will come over to talk to me as between the loss of hearing as well as the limited mobility I have to go out to anything parties/ functions  or even such simple things like going shopping for the weekly groceries( I had taken to getting this delivered not suitable as fruit/veg not good)

The PAIN CLINIC

Chronic pain and depression are health conditions that often go hand in hand. Many people who suffer from long-term pain and health problems, like fibromyalgia, neuropathic pain, complex regional pain syndromes and spinal pain, also suffer from depression. After all, when you wake up each day faced with debilitating pain, it’s understandable that you become less enthusiastic, and feelings of sadness and hopelessness can overwhelm you. 

So the pain clinic has seen me going from using baclofen/Lyrica/gabapentin well at this stage you get the idea of the different things I have tried as you do need to keep changing how you take these as the body does get used to taking the same meds that you build a tolerance to it and it loses the effects that would normally have given you. I has 6 years of living in a nightmare before they even considered me for the Ketamine Infusion Therapy, and I will day that this was amazing the 1st one and 3 months later that was good as well as they gave me 48hrs of pain free and then was able to reduce the amount of medication that I needed while this was working, Over time this became useless as then was giving me 2 days of reduced pain, but the worst about getting this was when it would wear off I would be in a living hell for roughly 3 days as my body would just lock up until  I could get the pain under control and as of this time I am waiting to see what will be tried next.

Ketamine infusion therapy

ketamine infusion therapy as a treatment for chronic pain and depression is not considered a first line intervention. When you’ve already exhausted traditional therapies and medications, but you’re not able to achieve long-term pain relief or reduce your symptoms of depression, ketamine infusions may be the alternative solution that finally provides lasting relief.

Additionally, addictive opioid pain medications have become an epidemic in our society. If you’re looking to become less dependent on opioids for chronic pain, IV ketamine infusions offer a controlled, often immediate effect on pain. For example, if you have to keep increasing the amount of pain pills you need just to get through your day, ketamine infusion therapy may allow you to take less medication or eliminate it altogether, and provide relief from chronic, debilitating pain. 

With IV ketamine infusion therapy, it’s possible to experience an improvement in your pain or mood within just a few hours. We here at The Pain Team find that a single infusion is usually sufficient to provide significant relief, often lasting for weeks to several months. Our doctors create a customised ketamine infusion therapy plan based on your individual needs and its effects on your pain or depression. 

After the initial treatment, you work with your doctor to determine if regular maintenance treatments spaced at longer intervals than your first ketamine infusion may be beneficial to helping you maintain your positive results. Our doctors may also recommend ketamine infusion therapy in combination with cognitive behavioural therapy and other treatments as a holistic approach to helping you manage pain and depression for the long term. 

Being unable to successfully manage your chronic pain and depression can lead to increased symptoms and feelings of hopelessness and fear that you’ll never feel better or normal again. Here at The Pain Team, we can help you get your life back.

DEPRESSION: I can understand that this is a very debilitating time in life that sees you more or less become a shell of the person you used to be and for me I have made it a rule not to let it get the better of me, as I am a strong person and have a strong willpower to help achieve this goal, but it's not always easy and although you keep moving and if your like  me i had refused the use of any for of anti-depressants for a long time before I gave, and they in turn became a blessing as they have a way of helping with the pain. So I started on amitriptyline 10mg to begin and over time I am currently taking 30mg as they really do work, (now I do take myself off these at 2 times in a year so I don't become addicted and  I do this with all the meds I take. If gives me the feeling of control).When amitriptyline is used to treat nerve pain, it lowers the pain signals to the brain. This helps to reduce the level of pain you experience, which can enable you to get back to your daily activities and have a better quality of life.

ENERGY: When suffering with any chronic pain your immunity system will also take a hit as you do get left feeling really tired and just cannot  do anything, well the way to help this is to take nutrients such as Vitamins  B, D, Iron, Folic acid and Magnesium (start your day with a Banana as this is amazing for energy and can be topped up throughout the day to keep them level) As we both know that to help with depression is to have the energy in the 1st place to move as this will help raise the Endorphins in the body. What are endorphins? Endorphins are chemicals (hormones) your body releases when it feels pain or stress. They're released during pleasurable activities such as exercise, massage, eating and sex too. Endorphins help relieve pain, reduce stress and improve your sense of well-being.

So if you have or are newly diagnosed with  FIBRO/POLYMYALGIA here is what I advise you  is to not let this define you as person. 

Questions you get asked a lot of or a lot of what people say, don't give this a second thought as this is were the depression comes from and it doesn't help trying to explain to others that will not understand what you are going through as they don't have this

Top of the list of questions I was asked and how to explain it so an idiot can understand

Q1) What is wrong with you?

I Have a condition called fibromyalgia

Q2) What's that and what does it feels like?

It's Pain throughout my body and I will then in turn explain so they understand it better is imagine someone kicks you in the stomach and then inserts a knife and twists it around, now imagine that through your body and that's tells the pain all over my body all of the time and that take pain meds to move around.

Q3) How do you get it?

Don't Know, nothing conclusive to why a person gets this as everyone is different

Q4) What can cure it?

NO, as the doctors say it is not curable but it's treatable with a regime of meds.

Q5)How are you able to do anything?

Take each day as it comes and just go with the flow because if you try to overdo things, well that just asking for trouble and I have found that out the hard way

Then the top 5 statements made to me do be

1) I think your milking it as your out and about today like a spring chicken

2) If you need a hand with anything let me know

3) You should get out more as your in the house to much

4) Did you fall out with me as you don't stop and talk anymore

5) You need to get yourself a job

So don't let people judge you or let them get you down if you feel like this each time your with them, then cut that negativity out and reduce the time spent with them as the only way to keep you right and positive is having a network of supportive people around you that will help out but not judge you on this. Take up a hobby that you can control i have fallen in love with 5d art as it time consuming and relaxing, but most importantly it keeps my brain active. An active  brain is a happy brain. When you are going through this another obstacle is the weight that gained through limited activity and that you are only able to do exercise every now and again, well firstly don't give up on this as it's just a case of eating healthier and drink plenty of water. I had lost a lot of weight as I said prior to getting this which saw me gain a lot of the weight back and more, this got the better of me for a while as I was unable to lose the weight again through my limit use, so I did come up with a diet plan and simple exercises that saw me lose over 3 dress sizes and losing just over 4 stone of the 7 I had put back on. I have been putting a book together with the way I have done this and will be posting this on my site at a later stage. But in the mean time would love you to give me feedback on this as we are all in this together and it always great to have a listening ear that understands what your going through.