Explaining chronic pain pt2

It is our understanding that these effects of chronic pain fall within the definition of a disability as described in the Equality Act of 2010: (‘a physical…impairment which has a substantial and long-term effect on a person’s ability to carry out normal day-to-day activities’) The effects of pain may have a direct effect in preventing a person from doing an activity, or there may be an indirect adverse effect, e.g. where the person can perform daily activities but suffers pain and fatigue when doing so. This is a common picture with chronic pain sufferers. Therefore, people with chronic pain are entitled to all the provisions under the Equality Act for

‘Reasonable adjustments’ to be made at work if they are managing to work, and in terms of access to all the usual public facilities.

Chronic pain presents a person with many challenges and it is only natural that a person who is greatly affected by their pain will need to learn new methods to manage these challenges. The aim of the INPUT Pain Management Programme is not to cure or reduce pain; instead; it aims to help people to take a different approach to living with constant pain and to work to improve their quality of life. It includes such elements as exercise and stretch, mindfulness techniques, working on valued activities and ‘approaching activities differently.’ The latter can include experimenting with doing activities in different ways, breaking them down into smaller steps, modifying tasks and incorporating breaks and changes of position in order to make overall activities more manageable.

Some people with chronic pain take medications and would rather not take these due to concerns about side-effect. We can help with this on the programme; however it is important to note that reducing or stopping medication does not signify that the pain has reduced or ceased.

Many people with chronic pain have had to give up employment, due to their pain. Many have a goal to return to work in some form, although it may not be to the job role or the hours that they were doing before. If they have not been able to work for some time, it is essential that people with chronic pain are allowed sufficient time to build up activity levels and fitness before attempting to return to work. Owing to the fluctuating and complex nature of chronic pain, it is not always possible to make predictions about how long this process may take; and if someone attempts to return to work too quickly, this may not succeed or be sustainable over time. There are various schemes to help people with disabilities to return to work. These can be accessed through the Disability Employment Adviser at the local jobcentre.

Chronic pain does not always mean that people cannot work; there are people who manage to do so successfully. People with chronic pain who are still working will need to consider and discuss with employers how the new approach and the skills they have learned can be applied in their work situation. Reviewing their support needs, making adjustments to the work environment, and considering different working hours or different ways of working can all be seen as examples of “reasonable adjustments” under the Equality Act (2010), which could enable a person with chronic pain to work in a more manageable and sustainable way. Such adjustments often do not need to be complicated or expensive.

Although the INPUT programme can significantly help people to improve the quality of life, it does not mean that the chronic pain problem will be cured, or that the intensity of the pain will reduce. People with chronic pain can learn to function well even in the presence of pain; however, it is important to bear in mind that living with pain poses daily and continuing challenges.

If you require further information, please visit www.gstt.nhs.uk/input

The INPUT Pain Management Team

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Explaining chronic pain Pt1

Before I left the pain management program, the team handed out this print out which I think is a perfect explanation as to what is happening for people with chronic pain.

Acute pain is short term pain – It begins and then usually passes. It usually signals an injury or potential injury.

Chronic pain is long term pain. This is pain that lasts longer than 6 months, and it can go on indefinitely, despite treatment.

Some people living with chronic pain have had an injury or illness that clearly led to their pain, however many others have not. Sometimes it is not clear why the pain has started. When there is a clear initial injury we know that for all tissues in the human body, the healing process is usually complete after about 6 months. So, for people who have chronic pain, the time for healing has passed, but the pain is still continuing.

The symptoms of chronic pain are usually permanent. Chronic pain is a medically recognised condition that causes a great deal of suffering. The causes are not fully understood. It is known that there are neuro-physiological changes in the central nervous system following persisting pain although these are not detectable on commonly used scans or tests. Normal signals of touch, pressure, and movement pass to the central nervous system, but are interpreted as abnormal/painful. Thus pain is felt, even though there is no further damage or injury occurring. This is called central sensitisation. Patients who are transferred to the INPUT Pain Management Unit have usually tried many medical treatments, with little or no relief from their pain. These treatments fail because the pain symptoms are no longer generated at the site of the original injury and (most likely) because the pain symptoms have caused changes in the central nervous system itself, and these changes can be extremely difficult to reverse.

Unfortunately, it is quite common for people with chronic pain to feel that others do not understand or appreciate their pain. At the same time, we know that the pain is very real and is not imagined or just ‘in the mind’. The fact is however, that chronic pain can be confusing for those who do not experience it. It is not possible to correctly guess how much pain a person has just by watching them. A person can be doing activities and look as if they do not have any pain, when in fact, they have a great deal. Certain positions and everyday activities can feel particularly difficult to manage due to pain or fatigue, and may be avoided. Also, at times, many sufferers can experience increases in pain levels, which can impact on mood and ability to function. Over time, a pain sufferer’s life may become very narrow. Helping people to function when they have pain is an important goal, particularly when this can be done with respect and understanding.

Costochondritis

 

Half way into my second week on my residential pain management course my neck went into spasm. The last time that happened was back in May and I literally forgot how painful it can be, which is quite normal. What was even more challenging was not being in my own environment to deal with my pain. I put my soft collar on took my pain meds, made a hot water bottle and went to class all the while thinking, how am I going to get through this… even with the techniques I was learning, such as defusing from my thoughts and feelings and deep breathing,  every breath and movement felt like it was working against me. Unfortunately this episode set off a fibro flare. Not a full blown flare where I couldn’t get out of the bed, although it felt like it and I was very tempted believe me. But a flare that hit me suddenly whilst sitting in class and there was nothing I could do but squirm off the chair onto the floor. I wanted someone to pick me up and carry me to bed but that didn’t happen. Occasionally what comes with my fibro flares is Costochondrits.

What is costochondritis?

Costochondritis is an inflammation of the cartilage in the rib cage. The condition usually affects the cartilage where the upper ribs attach to the breastbone, or sternum, an area known as the costosternal joint or costosternal junction. Chest pain caused by costochondritis can range from mild to severe, mine was severe and it still hasn’t cleared up! Mild cases may only cause your chest to feel tender to touch or some pain when you push on the area of your chest cartilage. People with costochondritis often experience chest pain in the upper and middle rib area on either side of the breastbone. The pain may radiate to the back or the abdomen. It may also get worse if you move, stretch, or breathe deeply.

Severe cases may cause shooting pains down your limbs or unbearable chest pain that interferes with your life and doesn’t seem to go away. This is what I was feeling, breathing was hurting and I couldn’t lie down on the floor because it was too flat, and the amount of cushions I had was not enough, the discomfort radiates up into my throat.

What causes costochondritis?

The exact cause of costochondritis in most people is unknown. But conditions that may cause it include:

Trauma to the chest, such as blunt impact from a car accident or fall

Physical strain from activities, such as heavy lifting and strenuous exercise

Certain viruses or respiratory conditions, such as tuberculosis and syphilis, that can cause joint inflammation

Certain types of arthritis

Tumors in the costosternal joint region

Many years ago, on two separate occasions, an ambulance was called for me because I was experiencing severe chest pain and trouble breathing. Of course I thought I was having a heart attack. It was costochondritis… The recommendation is;

Always seek immediate emergency care when you have abnormal and debilitating pain in your chest. It can indicate something serious, such as a heart attack. Getting care as soon as possible limits the possibility of complications, especially if an underlying issue is causing your costochondritis.

If you have chronic costochondritis like I do the pain may return — even with treatment — when you exercise or engage in certain activities. In these cases, you may need to seek long-term care to make sure that costochondritis doesn’t affect your quality of life and ability to take part in daily activities. I have experienced this for many years and deal with it and ride the storm.

The chest pain associated with costochondritis is a common symptom of fibromyalgia. With fibromyalgia, you may experience soreness and pain in your chest in addition to all that comes with Fibro.

This condition usually isn’t persistent. In many cases, costochondritis goes away on its own. Mild cases of costochondritis may disappear after a few days. Chronic cases can last for weeks or more.

Lessons learnt

I keep reminding myself that whatever position I find myself in, be it lying down on an aeroplane with a back spasm or spending 3 weeks away from home on a pain management course trying to learn to do the things that matter to me despite the pain. I can do anything I put my mind to.

Pain tolerance vs pain threshold

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We all go through emotional and physical ups and downs in our everyday life, but today lets focus on physical …

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Radio Frequency Nerve Ablation

Well the last lot of injections I had had worn off after 8 weeks or so and I was back to square one. Although it wasn’t very long it felt good to have some relief, these days I’ll take anything I can get. During my last consult a longer term solution was also offered to me.
Radiofrequency denervation (also called facet rhizolysis or radiofrequency ablation) is a procedure to help treat back or neck pain that comes from your facet joints. Each of the bones in your spine has a set of facet joints, which stabilise your back and help your spine to move. Radiofrequency denervation is a treatment that uses heat to deactivate the nerves around your facet joints that are causing your pain. These nerves are called medial branch nerves and send pain signals to your brain if you’ve got inflammation in your facet joints.
Your doctor will use radiofrequency waves (a form of electricity) to heat the tip of a needle which is used to destroy the nerve endings. This aims to stop the nerves sending pain signals to your brain. You’ll only be offered radiofrequency denervation if you’ve had a facet joint injection that showed that your pain is definitely coming from your facet joints. The aim of radiofrequency denervation is to provide longer-term pain relief than a facet joint injection. So how is it done?
You’ll usually have radiofrequency denervation in hospital. You can have the treatment and go home the same day – you don’t need to stay overnight.
You’ll need to lie on your front while you have the procedure. Your doctor may give you a local anaesthetic to numb any pain while you’re having it done. They may offer you sedation too, to help you relax. I have never had injections in my back without being sedated. Your doctor will take X-rays to help them guide a needle to the right spot in your back. They may also need to inject a type of dye called contrast medium to help highlight where the needle needs to go.
Then a small electric current is passed through the needle to help find the nerve that is causing the problem. They will then use radiofrequency waves to heat the tip of the needle and destroy the nerve endings. This will stop the nerve sending out pain. Your doctor may inject a steroid to help with any discomfort you might get after the procedure.
I was told I may experience an uncomfortable burning feeling in my back whilst the nerves die off, which could take up to 3 weeks. The first 3 days felt like a miracle had taken place as I felt no pain whatsoever. I think that was the numbing agent because I then felt the pain. I counted the weeks praying for this to work, and low and behold, the third week I had no pain in my lumber region as I had been experiencing for, well for ever… It has been 4 weeks and I’m thinking is this for real? Although the experience of feeling no pain in my lumber region is wonderful, I have to deal with a ridiculous amount of pain in other areas of my body which slightly dampens down the excitement, I am truly grateful all the same.
Some people have asked me how long it will last; well the nerves are usually blocked for 6-9 months, although it may last as short as 3 months or as long at 18 months. Some people have reported having relief for years. So there doesn’t seem to be a clear cut answer for everyone. I want to be the latter…
Lessons Learnt
Having had this procedure, doing my Pilates is a lot less painful now. Trying to do the things you know will help you in the long run whilst in excruciating pain is not easy and not fun at all. I’m so happy I have finally found a pain management consultant that is understanding, empathetic and willing to listen. I am so thankful.

Facet Joint Arthritis

Barely 3 months into recovery from my cervical disc replacement and I was taken down once again. I wonder how many times I’ve actually said that. What seemed like a normal day October 19^th to be exact, (a normal day for me) ended with my back slowly going into a spasm in the evening and me left bent over in excruciating pain.  Here we go again.

After a few days it was evident to me that my already bulging L4/5 lumber disc had herniated. The symptoms I had/having were:

Severe back pain

Severe burning at the front of my thigh

Pain at the back of my thigh down to my knee

Pain in my groin

Tingling in foot and toes

Muscle weakness in the affected leg.

I couldn’t sit down, I couldn’t drive, and I couldn’t walk without crutches, therefore couldn’t go out for the first 2 ½ weeks. I had no choice but to increase my meds significantly which caused all sorts of gastric problems but gave me some form of relief where I could sit for longer than 5 mins at a time.

I contacted my Neuro surgeon to see if he could give me an injection to help with the pain I was experiencing. I was told he doesn’t do the injections himself and referred me to his colleague who is a pain management consultant and anaesthetist. I met with her on the 14^th November to discuss what she could do for me. We went over my last MRI, and it’s the first time anyone had been so thorough in explaining every little detail on that scan.  She told me she could give me a facet joint injection at L4/5 to reduce the inflammation, it is this area I have osteoarthritis.

What is facet joint arthritis?

The facet joints are located in the back portion of the spine. The joints combine with the disc space to create a three-joint complex at each vertebral level. The facet joint consists of two opposing bony surfaces with cartilage between them and a capsule around it that produces fluid. These joints allow you to bend back and forward, left and right.

The combination of the cartilage and the fluid allows the joint to move with little friction. However, facet joint arthritis causes the cartilage to breakdown and the joint movement is associated with more friction. One loses motion and as they get stiffer they have more back pain.

I was also offered a dorsal root ganglion block injection at L4/5 and L5/S1 where I have herniations to treat the nerve issue in my leg.

What is a dorsal root ganglion block/nerve root block injection?

The nerves that carry sensation come out of the spinal cord and branch out to the different parts of the body. The dorsal root ganglion looks like a small swelling on the nerve where it joins the spinal cord. It is here that impulses from the nerves are transmitted through to the spinal cord. Local anaesthetic can be injected into the dorsal root ganglion to slow down or block nerve impulses.

A week later I was in hospital having the procedure under sedation.

Looking back I was trying to think if I did anything out of the ordinary to cause this to happen. The only thing I could think of is, I had started visiting my local pool with the support of my daughter. Gentle exercises in the pool that I had learnt in hydrotherapy over the years and a little swimming. I explained this to my consultant because I couldn’t believe that had caused this because swimming is supposed to be good for you right? She asked me if I was swimming breast stroke and I said no because I can’t even swim that stroke She told me when you swim breast stroke your back is arched and it shouldn’t be done if someone has back problems like mine. She feels something I did in the pool had caused this unfortunately. I had only been 3 times and feel very apprehensive to go back.  Her recommendation to me was to do Pilates exercises to strengthen my core muscles, which I know I should have been doing more vigilantly. After my follow up with her I can go back to the pool but no swimming, only walking in the pool and gentle exercises holding onto the side.

Lessons Learnt

I hadn’t even been discharged from physio for my cervical disc replacement and this happened. Talk about kick in the teeth. Using crutches has aggravated my neck and shoulders, hence increasing nerve pain down my arm again… I feel like I’ve taken 10 steps forward and 100 steps back. I was determined to strengthen my back that’s why I started at the pool and I thought I was taking it slowly. I now know it wasn’t slowly enough. Thanks to these injections I think my Christmas will be a little less stressful.

Merry Xmas everyone.

Cervical disc replacement Vs cervical fusion

My surgeon had suggested doing an anterior cervical disc fusion on my C4/5 disc and I went away to research what would be involved and how it would benefit my situation. So what is an ACDF?

Anterior cervical discectomy and fusion is surgery to remove a herniated or degenerated disc in the neck. An incision is made in the throat area to reach the front of the spine. The disc is removed and a graft is inserted to fuse together the bones above and below the disc. I read and watched videos of other people’s experience regarding this surgery, some positive others not so much. The main pitfalls I kept coming across with this surgery were the fact that motion is lost at the fusion site. Also the discs above and below the fusion site take more strain because of the lack of movement and therefore degenerate quickly causing further complications above and below. I was so afraid of that possibility I continued to search for alternatives. Then I came across the cervical disc replacement which in retrospect is a much newer procedure compared to a fusion. The benefit of the disc replacement is that you retain complete movement at the surgical site and therefore the discs above and below won’t be compromised. Recovery time is also generally quicker for a CDR. There are many factors to consider with every individual case of course as we are all individual, and can only speak on my own experience. The discs above and below the disc in question are still in good condition for my age, although my neck has loss of lordosis and is Kyphotic.

Cervical Lordosis is a curvature (slightly inward) of the cervical spine or vertebrae in the neck. There is a normal slight curve in the cervical vertebrae that enables easy movement of the neck. Loss of lordosis is when the neck begins to straighten. Kyphosis is an abnormal condition in the neck in which the normal inward curve reverses, hence the phrase Kyphotic.

Here are a few potential causes of Kyphosis:

• Aging especially if you have poor posture
• Muscle weakness in the upper back
• Arthritis or bone degeneration
• Osteoporosis

I discussed the latter option with my surgeon and it was concluded that it would be the better option for me. The risks of such a surgery were discussed fully with me. Having to reach the spinal cord through an incision through the throat, moving your esophagus and vocal cords out of the way all seemed scary as hell, but not doing it was scary as hell too. The worst thing was being told there is a chance the surgery will have no impact on your symptoms at all… I thought I knew what fear was when I had my back surgery 2 years ago. This level  of fear was on a different scale, off the chart type of fear.

On the 13^th July I had the procedure done using the M6 titanium disc with an artificial nucleus made from polycarbonate urethane.  I think understandably my family were more nervous and concerned when I went down to surgery this time.  I spent the first 24 hours in intensive care where my family were allowed to stay with me.  The surgery was a success and I am 11 weeks into my recovery. My surgeon told me the offending disc had started to wear away the dura, which is the outa layer of the spinal cord. I am glad I had the surgery and I am very fortunate to have had the surgery in the time frame I did before irreversible damage was done.

Lessons learnt  

Always take the time to learn about your procedure and any other procedures which are viable options.  For some people a fusion is the only option .Write a list of questions for your surgeon to answer so that you are comfortable going further.  What happens during the recovery period is just as important. Knowing what to and what not to expect can make for a smoother recovery.  

Radiculopathy and Myelopathy

DAY 1 of trying to type

So after enjoying a family event, I thought I was in a bad flare which was to be expected but my symptoms were just getting worse and worse. The neurological symptoms returned aggressively, worse than before. I knew it was my neck. I’ve typed these few lines and stopped…my right arm and hand won’t work. One week later and I’m back…where was I? oh yes the symptoms.  Starting from the top, the side of my face felt like electric shocks intermittently and behind my ears too. My head feels like it’s too heavy for my neck to support so occasionally wearing a soft neck brace helps with that. My shoulders feel like someone is sitting on them constantly; because of this I no longer carry a bag on my shoulder. My arms are so heavy and weak that everyday tasks like brushing my teeth and combing my hair are a real nightmare. The weakness and now the pain (because of typing) in my right shoulder, arm and hand are too severe to carry on typing so I’ll try again later…

2hours later

My legs feel like jelly and I walk with an altered gait which comes and goes, I can’t use any walking aids because my upper body isn’t working properly and I cant drive. My head will start to shake at random times all of which I have no control over and believe me I’ve tried.

1 week later trying to type this…

I decided maybe I should make an appointment to see a pain specialist again, maybe they could give me a nerve block injection in my neck to help with the symptoms. This was a new guy I hadn’t met before, he was rather abrupt in his conversation,   I personally felt he had no people skills whatsoever.  After giving him thorough details of my current situation and showing him a copy of my last MRI done in Nov 16, he said “there’s nothing I can do for you, a nerve block injection won’t help”. My heart sank and the tears started to flow uncontrollably. He explained it like this; the herniated disc is pressing on my spinal cord itself, you can block nerve pathways to the brain but not the pathway from the spinal cord to the brain. I think if I didn’t open my mouth again and just got up to leave he would have just said sorry and goodbye.

1 Month and 3^rd time lucky…

I said to him, so that’s it? You don’t have any suggestions as to what I do now or where I go from here? He then said, ok what we need to do is refer you to the spinal surgeons at Guys hospital. Why did I have to ask him if there was anything else that could be done at this stage?

I pointed out that I already have a neurosurgeon that performed a successful Micro discectomy on my lumber spine L5/S1 2 years ago this month. So he would be the person I would want to go back to, and a referral was done there and then. About a month later I had been to see my surgeon after having a new MRI done to see if anything had changed since my last one 6 months ago and to be honest it didn’t show much difference. We concluded that conservative measures were not helping, and I told him that the pain specialist said he couldn’t help. Once again for me living like this is severely affecting my ability to function on a daily basis. So it was down to me whether I wanted to go ahead with a very common yet risky surgery.  If I don’t my  condition would either stay the same which is severely affecting my daily functioning, or get worse and damaged my spinal cord permanently and leave me paralysed. Granted I have had a few moments of rest bite and drove the car for 5 mins or so, but then I’m brutally reminded of what I’m living with.

 

LESSONS LEARNT

My surgeon is surprised at the severity of my symptoms compared to what he can see on my MRI, and admitted as surgeons/neurologists sometimes they will never truly understand the complexity of the nervous system/spinal cord and brain. I have joined a few groups on Facebook for support; one of those groups has helped me tremendously called Cervical Myelopathy Support Group, ACDF, Spine, Joint and Muscle Conditions reminding me how much of an advocate we have to be for ourselves when it comes to our health. The two same people could have an identical MRI but show significantly different symptoms. I believe having Fibro really doesn’t help.

Radiculopathy refers to a set of conditions in which one or more nerves are affected and do not work properly (neuropathy). This can result in pain, weakness, numbness or difficulty controlling specific muscles

Myelopathy Spinal cord compression

Hard wiring vs Soft wiring

 

I keep thinking what on earth happened in 2016, where did that year go? Why have I ended up feeling the way I am? It all feels like a blur now but I think my body is struggling to let go. Let me take you back to the beginning of 2016:

• January and February, consumed with re-applying for my disability benefit
• March, traumatic Atos assessment in my home
• March, discharged from pain clinic nothing they can do for me anymore
• April, Benefit decision, lost part of my benefit
• April, Charlotte moved back home from university
• May, weekend break in Cornwall with Mr W to recharge
• May, lost my Motabilty car
• June, went into hospital to have a 7x8cm cyst (pelvis) drained laparoscopically, only to be told we can’t get safe access to it without cutting vertically from navel to pelvis. I left!
• July, Charlotte graduated from University
• July, Rachel went to Aya Napa with her girlfriends
• August, Rachel passed her IB diploma with part scholarship and got into her first choice university
• August, my dad got married and I was a witness
• August, Christopher received his GCSE results which were mind blowing
• September, Christopher started his IB course at 6^th form
• September, Rachel left for university
• October, won my court appeal and received my benefit back
• October, my sister needed my support with looking for primary schools for my niece.

 

My symptoms crept in slowly… I noticed I was having difficulty putting one foot in front of the other, I had to really concentrate. Then my arms felt like jelly, too heavy to lift so impossible to use crutches. Then I noticed when I was watching TV or trying to read something, my left eye was blurry, dramatically different to my right eye. I kept that to myself for a while maybe it would pass, but it didn’t. I was stuck in bed unable to even lift my arms up long enough to hold a glass to my mouth or my phone to my ear. I ended up in A &E when those symptoms became unbearable, plus I could hardly see out of my left eye!

I was terrified now, (I never showed it) my mind was wondering to places I know it shouldn’t be going, is this MS, am I having a stroke, my speech was slower and I had a tremor.

The hospital gave me antibiotics for my eye and told me there’s not much we can do for you (that’s when I noticed the doctor had googled Fibromyalgia). If your eyesight does not resolve itself take yourself up to the eye hospital.

In November I was back to see my Neurologist, I had another brain and neck MRI, (I already had a damaged C5 cervical disc) I had a myriad of blood tests and nerve and muscle testing done, again. They all came back normal; my neurologist was looking for a handful of different neurological conditions. The tremor I discovered was from the morphine patch I was wearing and the rest is Fibro…

My consultant and I chatted for ages, it was obvious he was frustrated as was I, that there is nothing he can do for me; he knows I have tried everything and more than he could offer. He told me ‘we have checked your hard wiring i.e. the nerves and muscles, and they are fine. It’s the soft wiring we don’t know how to fix’. My brain is misfiring and sending the wrong signals to every part of my body. We even talked about Hyperbaric Oxygen chambers which involves breathing pure oxygen at higher than atmospheric pressures in an enclosed chamber. A few of his MS patients have tried it but the results were very short lived.

It’s now a new year and who knows what’s in store for me this year, the last few months are still taking its toll, my arms still don’t feel like my own and the costochondritis plagues me on top of everything else, but my eye is back to what I would call my normal. Christmas is out the way, the crap food is gone and I’m focused and happy, happy new year from me to you.

 

Lessons learnt

When these symptoms started I didn’t feel stressed at all and couldn’t think what could have possibly brought them on. Only when I looked back at my calendar did I re-live those emotions of those events. Anxiety, depression, joy, exhilaration, sadness, disappointment, anger, humiliation, fear, to name a few. I can only guess that’s how my body dealt with them.

 

Loss

 

Most of us unfortunately have experienced some form of loss in our lives in one form or another. As a society we cope better with the finality of death. There are religious and cultural ceremonies, people attend memorials, send cards and flowers and even bring you food. Normally there is a tremendous amount of support in the initial weeks following, and maybe months afterwards. The few will be there for you for the years to follow.

But when the “loss” is not final or the stress and devastation of a chronic illness is ongoing, what then? There isn’t a card that says “sorry for your ongoing chronic illness”

Some people really don’t know how to deal with seeing their friends suffering and they don’t know how to react or behave. Illness can make people feel rather uncomfortable, unless that is if they make the effort to understand what’s wrong. Endless hospital and doctors’ appointments are obviously not as appealing as coffee and lunch dates, but imagine how your friend feels having to tell you they can’t make it because they’re in too much pain today or they’re anxiety is through the roof and they can’t leave the house.

One may feel abandoned and let down by their sick friend, but the majority of the time they are busy taking care and managing the complexity of their medical condition and can’t afford to focus on your feelings of abandonment this will intensify their levels of stress and further add to their suffering. Understandably one may have problems of their own and cannot find the energy to support their friends.

Some friends will fall away… the visits become less, the random chats on the phone become less frequent and the invites for shopping trips and coffee stop. There are levels of friendships that you have to decide whether they are worth saving, when you have zero levels of energy to fight with. Your focus in life dramatically changes but theirs stays the same.

Talking from experience, it’s important not to take it too personally even though it feels terribly personal when you’re going through it. It’s a learning experience. It’s important to give them the benefit of the doubt. Maybe they felt they didn’t want to bother you, perhaps they thought that no contact or little contact would be better than feeling helpless in your presence. Maybe they don’t know how they can be supportive, unless you tell them and make them feel at ease. They may also have their own struggles and simply can’t handle yours too. Don’t judge them too quickly like I did. Love them anyway.

Fortunately there are some friends that don’t fall away and don’t need to be told what to do or say. They can be your life line in helping you stay in touch with friends who think they may be intruding. You don’t have to be in contact with them every minute but you know those friends are always a phone call or text away. It’s even easier now with social media sites.

Thankfully there are support groups online for just about every illness and problems life can deal you. I have met some amazing people and made great friendships that I know only they will truly understand what it’s like to live with chronic illness…

 

 

Lessons learnt

 

The loss of your former self is a mourning process and I don’t know if and when that ends. But that doesn’t mean you stop living. You just learn to love a new self and appreciate the strengths you still have and the new ones you have found.