Covid-19 & my struggle with chronic illness. M’s story…

About Covid-19 and my struggle with chronic illness…

It’s a long time since I last wrote an article (about this time last year) time has flown by and it has been an awfully rocky ride!

I am now fully recovered from a Covid-19 infection which put me in bed for 3 weeks, and during the last week of recovery when I could actually think straight I have done a lot of reflecting on the past year. Firstly, you are probably wondering what kind of symptoms I had with Covid-19.

Well, my husband first got infected with it and sailed through it in 48 hours with fever, a dry cough, and some general aches and pains.

Since there was no way to self-isolate from him I kind of knew it would be a miracle if I didn’t get it, but surprisingly it took 10 days to finally get me, but not before it infected my mother and father who live in the same house.

They were taken off in 2 separate ambulances and given that both of them are over 75, have heart conditions and my mum has asthma, I was frightened that I would never see them again!

Thank God they have since recovered, although still very fatigued from the whole nasty experience. It finally hit me when I started menstruating heavily with the usual painful cramps that you get with endometriosis. I guess already being anaemic didn’t help my immune response to Covid. 

So first I got the scratchy/sore throat then a slight dry cough, the next day the fever, nasal congestion, and headache appeared, at which point I did a Covid test, and on the third day, I was vomiting bile and had diarrhoea.

I couldn’t keep anything down and was just about managing water. The fever, headaches, and vomiting lasted about 5 days, and aftthat, I still couldn’t stand up without getting vertigo and nausea, let alone eat.

I lost my taste and smell, but surprisingly my cough disappeared quite quickly after the first 3 days and I was lucky the virus didn’t attack my lungs.

In the second week, I had no appetite whatsoever and I felt so weak and dizzy that even showering was a huge task and I needed to lay down again straight afterwards.

All I did was sleep, drink water, and suck boiled sweets and chocolate, although I did manage to eat half a banana now and then.  I imagine you’re thinking – all that sugar, is not good for endometriosis symptoms! But it was basically all I could handle, and it was better than starving. I lost 4kg going from 52kg to 48kg within the first week. 

In the third week, I still had no appetite but started to force myself to eat some cereal, vegetable soup, and gluten-free bread with almond butter. I could hardly taste a thing so just forced myself because I knew I needed to get some energy.

By the end of the third week, I started to get my appetite back and went back to eating some fish and chicken again.

I also started to venture out for short walks as my mood was extremely low and my whole body felt stiff and painful. In week 4, I started working from home again but found it a real struggle getting up in the mornings due to my mood and fatigue.

Thankfully, 5 weeks post-Covid I can say that I have fully recovered my energy back to normal for me. I say normal for me because I regularly feel very fatigued due to my illness and I guess anaemia.

Covid-19 Pfizer Vaccine!

As I am a healthcare worker I recently had my first dose of the Pfizer vaccine, but to be honest I was really nervous about having it.

Even though I work in healthcare, I am still nervous about it for the obvious reasons of it being rolled out so soon without as much testing as we usually have for vaccines.

Also, the changes they keep making about when the 2^nd dose should be given is making me trust the government even less.

However, since I work in healthcare, my husband is a frontline healthcare worker and we live with my elderly parents who are vulnerable, I decided to have the vaccine regardless of my reservations and concerns about it.

I did have some side effects, probably due to the fact that I only had Covid 3 months ago and my immune system responded quite quickly.

I had the vaccine in the morning and by the afternoon I felt fatigued come over me like I was coming down with flu, by the evening I was feeling shivery and went to bed early with a fever of 39.

I was a bit off my breakfast in the morning and felt pretty shattered, so went back to bed for the rest of the day and when I woke up the fever was gone.

Hopefully, I will get the 2^nd dose within the next 12 weeks, as promised – fingers crossed!

After endo surgery…

I can’t believe it is so long since I wrote my last article when I was just 4 months post-surgery. 

Since then, all of our lives have been impacted in a huge way by the Covid-19 pandemic.  I remember I was still struggling with endometriosis symptoms and pelvic pain back in December 2019 even after surgery and was wondering whether I was ever going to recover. 

I was considering a Mirena coil and Oestrogen patch even though hormones really mess my head up, but I was feeling quite desperate.

Then in January, February 2020 the symptoms started to decrease and although I was still having those horrible pelvic spasms from time to time, I was due to see a pelvic physio to address this and things were looking more positive.

I had returned to Latin and Ballroom dancing a couple of times a week and me and my husband even entered into a competition for March fingers crossed that I didn’t have a bad period week that would mean I would need to pull out!

I tried to not worry about that and just tried to keep my mind positive, we even went out to buy new costumes and shoes for the competition, because I thought well even if I have to pull out this time, I will do the next one or the next one may be the next one, but I will do it this year!

I was determined. Little did we know we would go into National Lockdown before the competition and would be for the next 3-4 months!

Covid-19 really is the worst thing that could have happened to me whilst I was trying to recover and get my life back on track, although I can imagine how terrible it must be for all of those women out there who are still waiting for endo-surgery.

I should actually count myself lucky that I had my surgery just before this all started!

Anxiety and OCD during Covid times

Since Lockdown a number of things have happened and unfortunately, both my physical and mental health have deteriorated to the point where I am now working from home permanently and am hardly getting any exercise, although trying as best I can.  

Up until May, I was going in to work 5 days a week as I work for the NHS as a medical secretary, but I was feeling very strained and stressed with the usual endo symptoms every month (although not as severe as previously they were still there), my pelvic physio sessions had been stopped and I was finding it hard to get food in the supermarket, especially as I am gluten, dairy, and red meat-free and most of what I eat are fresh vegetables, which were proving hard to find! I was also understandably worried about catching Covid-19.  

You see I also suffer from OCD and it is not the type of OCD that most people think is just about being tidy and a bit germ-phobic, what I have is a mental illness that I have had to manage and keep under control for years.  

So Covid really set my OCD behaviours and thoughts off again to the point where I was washing my hands until they were bleeding and also washing my cutlery over and over again. 

I was feeling really frightened on public transport when there were too many people around and felt completely contaminated by the time I got home from work. The first thing I did was strip my clothes and jump straight in the shower.  

This wasn’t just because I was scared of catching the virus, but also because I felt a huge responsibility living with my parents who both have heart conditions. 

I sought help for my OCD, but of course, this could only be done by telephone consultations, which I wasn’t finding very helpful, especially as the therapist I spoke to kept saying that it was not surprising I was suffering from OCD symptoms again as we were living in the midst of a Global Pandemic!

Excruciating leg cramps and a torn calf muscle!

I carried on working and rushing around getting shopping for me and my husband and parents, and I was trying to keep up with exercising from time to time, even if just doing some weights and Pilates at home or just going for a long walk somewhere. 

I wasn’t sleeping very well and had started to develop severe cramping in my legs that made me shoot out of bed numerous times in the night and then I started to experience pain around my shoulders and my chest and rib area on top of my normal chronic pelvic pain. 

First I tried to ignore it all and carry on, but at the beginning of May I woke up one morning with excruciating cramps in both of my legs. 

I automatically tried to stand up out of bed, but because the cramps were so severe I had no balance, and I was about to fall but rammed my left foot down to the ground hard to recover my balance.  In the process of doing this I tore my calf muscle and then the pain was unbearable! 

I was laying on the floor, with my legs all in severe spasm and a torn calf muscle, although I didn’t know this yet!  

The GP did some bloods and they showed I was anaemic, but this was nothing new as I had been anaemic since my surgery and was struggling to do anything about it as iron supplements make me sick and apparently my haemoglobin isn’t low enough for an iron infusion on the NHS.  

I couldn’t walk for 3 weeks and I finally sorted out private physio consultations online to help sort me out.  I was panicking about work, but luckily my manager set me up for working at home, which I did for 3 months.  

In the meantime, my calf muscle was healing, but my other body aches and pains were getting worse. 

I was experiencing the usual pain that started in my pelvis, lower back and legs, but then it seemed to be spreading all over my body, shooting, stabbing, burning, dull achy pains, I was finding it hard to describe the type of pain as it seemed to a mixture of everything! The usual over the counter painkillers weren’t working. 

The only thing that helped was breathing exercises and a good night’s sleep. I did try using CBD oil as well which helped to soothe the pain at the time but didn’t make it go away.  

Then I started to experience headaches, vertigo and rashes like hives on different parts of my body and face that would randomly just come and go. I was feeling physically destroyed and frightened about what was happening to me. 

My mental health deteriorated further to the point that I was feeling suicidal again, just as I had before my endometriosis surgery. I felt like life just wanted to kick me down, each time I tried to get up and that it would always be like this and I had no vision of any future let alone a positive one!  

I was so frightened about what was happening to me I called my GP and physio to discuss my symptoms.  Both of them suggested that what I was experiencing sounded like fibromyalgia symptoms, but that I would need a referral to a rheumatologist to exclude other conditions.

Fibromyalgia diagnosis…

Before even having an MRI and bloods to rule out other conditions the rheumatologist provisionally diagnosed me with Fibromyalgia, as I am experiencing all of the main symptoms. 

After doing a bit of research I was surprised to find that I had almost all the symptoms including the IBS and acid reflux which I had had for years previously, just to a lesser degree. 

So, I looked up causes and treatment only to find that it was yet another one of those chronic illnesses that nobody is sure why it happens and there is no test to diagnose it!  I thought, fantastic yet another chronic illness to deal with along with the endo and the OCD. 

My MRI and bloods came back normal, except for the usual anaemia. I haven’t had a follow up with the rheumatologist yet to confirm a diagnosis of Fibromyalgia, but I think it is very likely.

Coping alone with chronic illness and anxiety during a pandemic.

After some telephone discussions with my GP, the private physio, and the pelvic physio I was previously seeing on the NHS, I felt quite alone with my struggles. 

My GP suggested the usual antidepressants and drugs such as Pregabalin, Amitriptyline or Gabapentin for pain. I declined as I had done my research and seen the side effects of these drugs and am not new to the side effects of antidepressants. 

I asked whether I could have a referral for iron infusion to help with the fatigue and muscle cramps since I really couldn’t handle iron supplements, but as before my haemoglobin wasn’t low enough yet!  

Both private and pelvic physios said that no specific exercise would help get rid of the pain I was feeling as fibromyalgia was caused by a central nervous system disorder. 

They suggested acupuncture once we were out of Lockdown, but not surprisingly this has still not materialised. I was still working from home and just tried to focus on work and getting through day by day, at least I had a job I thought!  

But I wasn’t satisfied that there was nothing that could be done to help my pain flare ups and in between the days of crying and sobbing, and the days where my mood was so black I didn’t want to even open my eyes in the morning, I kept doing my own research on things that could help fibromyalgia. 

I found that it was not good to not exercise at all, just as it was not good to overdo it! I think I had been doing the latter and overdoing it on the days that I felt well because I just wanted to feel some pleasure doing some dance practice with my husband or going for extremely long walks in the summer. 

I just felt like I had to crush everything into the days when I didn’t feel too bad because they were becoming few and far between. 

It only dawned on me how much I had deteriorated physically over the years, when the rheumatologist asked me when I last felt fit and well and I couldn’t remember, my answer was – 8 years ago! 

Apparently, the exercise I was supposed to be doing was a graded exercise, whatever that is??? 

I guess it would be different for everyone depending on the individual, so how would I know when I should stop, because my pain flares usually came the day after, not at the time I was exercising. 

I decided since nobody was going to be able to help me with a plan, I would make my own exercise and recovery plan. I was already eating the correct foods as an endometriosis diet is basically the same as an IBS diet or a fibromyalgia diet. 

I started to cut down dance practice sessions to no more than an hour at a time and tried to spread them across the week rather than do everything at the weekend. 

I made sure I did my own combination of Yoga stretches, Pilates exercises and Pelvic Physio breathing exercises every day no matter how I was feeling. 

I made sure that I went for a short walk every day after work, even if just to the supermarket to get moving. 

I was still having pain flare-ups on and off and I read that CBD oil was something that could work for fibromyalgia pain, so I started to use it regularly and found that after a few weeks of using it over my trigger point areas the pain was not so severe, and it even made me feel more sleepy at night and helped me sleep better. 

I found myself going 2 steps forward and 1 step back a lot of the time, but I tried to stop beating myself up about it and give myself a break from everything when I really wasn’t up to doing anything.

Getting through the darkest days…

Living with chronic illness is unfortunately about surviving through the dark days so that you can live to enjoy the brighter days! 

Recently, in the last week or so since having Covid and since the second National Lockdown, I have been feeling the depression creep in again and therefore my pain levels and symptoms have also deteriorated. In fact, just yesterday morning I was contemplating suicide, yet today I feel much brighter and more energised.  

It might sound crazy to you, but yesterday morning I had really had enough of the way life is treating me. 

I was woken at 5 am on a Sunday morning yet again by my father banging around the house and cooking god knows what at this hour in the kitchen…this is something he does all the time regardless of what day it is. 

I find it difficult to sleep as it is, and I get up at least 4 times in the night just to pass urine in between being woken by pain or acid reflux and nausea.  

My father is not someone you can talk to about these things, no matter what approach you take he just gets into a violent rage, so I have learned to keep my mouth shut. I wish I didn’t live at home, but unfortunately, since I only work part-time now due to my illness, and my husband doesn’t earn enough to cover, we cannot afford to move out of my parents’ house. 

Living under these conditions at the age of 45 is so frustrating and stressful for both me and my husband, and at times I feel a failure because if I could work full-time we could move out and have our own space, and I know that life would be much less stressful for me. 

8 years ago, I was working 2 jobs, as a part-time medical secretary and as a dance teacher/performer.  

We had our own little studio flat, we still struggled a bit with money, but we had our space, and we were happy.  

Then endometriosis raised its ugly head and I started to get terrible back pain, sickness, heavy bleeding, severe pain, and had multiple hospital admissions.  My body could no longer cope with a physical job and I had to give up my dancing and teaching career. 

I was also suffering from mental health problems, partly because of the pain I was experiencing, but also because I was being shoved from pillar to post by doctors who didn’t know what was wrong with me.  In the end, the financial strain of keeping up rent payments and bills was too great. We moved into my parents’ and have been there ever since. 

Living with chronic illness means that you have to accept that you can no longer push your body to the extremes you could previously whether it be work, exercise or even just socialising. 

As you can imagine for someone who was previously very active and driven, this is soul-destroying. With the help of counselling, I have learned to accept my situation as best I can, but sometimes I can’t help feeling anger and frustration about my situation, and I guess that is just human.

Yesterday I was feeling particularly emotional at 5 am after having a few days flare-up of my endometriosis pain. It felt like my ovaries were being squeezed and my abdominal muscles were cramping and squeezing my intestines like a vice. 

Accompanying this pain, I have had a burning feeling in my guts and stomach which I can feel even on my tongue, and it has been continuous for the last few days. 

I am already on antacids for reflux and follow a special diet for IBS, but I suspect that I am ovulating and the chocolate and sweets that I ate earlier in the week have probably contributed to this flare-up! Too much damn sugar!

When I get flare-ups like this It feels like my brain switches from survival mode (which is getting through the day and living in the moment mode) into self-destruct mode, and the thoughts that I have been thinking this morning are along the line of:

• I hate my dad why did he have to wake me up to this pain
• I will never be out of pain
• I will never get a decent night’s sleep
• I will always feel like a zombie dragging a dead body around, every day of my life
• This torture will never go away
• There is no cure for what I have nothing makes the symptoms any better
• The doctors don’t even know what to do with people like me, apart from prescribing me another drug to give me other problems
• Maybe I should get my doctor to prescribe me some hard drugs to make me sleep, so I can take all of them and be done with it

Then:

• How can I think like that when there are people dying in the world either of cancer or some other reason, these people want to live, and I am contemplating ending my life?
• I’m so selfish!
• How could I be thinking this way when I know how much it would hurt my husband and my family?
• My mother is ill, and I need to be here to take care of her!
• I’m a terrible person for thinking these things!
• Maybe I deserve the torture I am going through!
• Maybe God is punishing me!

….and the negative thought cycle continues!

I hate myself when I am like this, but I know that the black mood will pass and whether it passes in one day, two days, two weeks or two months is up to me. I know I am a fighter, and I will get up and carry on, but sometimes I feel like I have no relief from the fight and I would truly rather not open my eyes in the morning to face another day. 

When I am like this it is helpful to be around people that I can trust and talk to about how I am feeling. In my case it is my husband and my mother.  

It is also helpful to have a good cry and sometimes a good rant to get it all out (as long as I am not ranting at other people!).  

Usually, later in the day or maybe the next day I will try and go out for a walk to clear my head.  Yesterday I managed to get out for a walk after lunch and by the evening my thoughts had become a bit more positive, along the line of:

• Maybe I feel so bad this month because I had Covid and didn’t eat for 2 weeks
• I am probably very run down from losing more blood and the Covid infection
• Eating so much sugar when I was recovering was probably not a good idea and has probably caused a flare up in symptoms this month
• It doesn’t mean that next month will be the same
• I will get back on track with my healthy anti-inflammatory diet and hopefully my symptoms will improve again
• My mood is bad at the moment because of all of the above and also because I haven’t been out or exercised properly for weeks
• Next month will be better, we will be out of Lockdown and I can start up dance classes again, and meet up with friends

Already today I feel that my mood is more stable, despite the pain and symptoms still being there in the background.

The link between endometriosis and fibromyalgia.

Since I have had a lot of time on my hands during the pandemic, I have been doing a lot of research on both endometriosis and fibromyalgia, and I have discovered that there is a clear link between endometriosis and fibromyalgia. 

There is also a link between endometriosis, fibromyalgia and other chronic illness such as CFS/ME and other rheumatoid and autoimmune conditions. 

However, it seems that there is a particular link between endometriosis, fibromyalgia and CFS.  

According to the National Institutes of Health (NIH) women with endometriosis are twice as likely to have fibromyalgia than those who do not have the condition, in fact, 31% of women with endometriosis (that we know of) have also been diagnosed with fibromyalgia. In fact, there are 6 conditions in women that commonly overlap, and these are:

• Endometriosis
• Fibromyalgia
• Chronic Fatigue Syndrome
• IBS
• Interstitial Cystitis
• Vulvodynia

The exact cause for endometriosis is still unknown and there is currently no cure.  For those of you who don’t know much about endometriosis the main symptoms are as follows:

• Pain in lower tummy or back (pelvic pain) – usually worse during menstruation
• Period pain that stops you doing your normal activities
• Pain during or after sex
• Pain when peeing or pooing
• Feeling sick, constipation, diarrhoea or blood in your poo or pee during your period
• Difficulty getting pregnant

Theories of possible causes are below:

• Genetics
• Retrograde menstruation
• A problem with the immune system
• Endometrial cells spreading through the body in the bloody stream or lymphatic system
• Metaplasia: this is a term used to describe a process during which cells in the body undergo a change into endometrial cells
• Environmental causes

You can read more about what this all means via this link https://www.endometriosis-uk.org/causes-endometriosis

The main symptoms of Fibromyalgia are as follows:

• Increased sensitivity to pain
• Extreme tiredness (fatigue)
• Muscle stiffness
• Difficulty Sleeping
• Problems with mental processes (known as “fibro-fog”), such as problems with short term memory and concentration
• Headaches
• Irritable Bowel Syndrome (IBS)
• Gastroesophageal Reflux Disease (GORD)

The exact cause for fibromyalgia is also still unknown and there is currently no cure for this either. Theories of possible causes are below:

• Abnormal levels of certain chemicals in the brain and changes to the way the central nervous system (CNS) processes pain messages carried around the body, basically a dysregulated nervous system
• Genetics
• The condition appears to be triggered by a physically or emotionally stressful event, or multiple events, such as an injury or infection, giving birth, having an operation, the breakdown of a relationship, the death of a loved one, physical or emotional abuse, PTSD etc.

Given that suffering from symptoms of endometriosis for years without a formal diagnosis is in itself a very stressful and painful ordeal, it is understandable that for a lot of women other chronic illnesses such as fibromyalgia and chronic fatigue will inevitably start to set in at some point, especially if these women have suffered previous chronic stress in their lives. 

This is certainly the case with me. 

Health professionals claim that there is no cure for either of these diseases only a stack of medications that may ease the suffering or surgery in the case of severe endometriosis. 

Well in the past 9 months I have done my own copious research on both illness reading numerous books and checking out medical websites across the globe, watching TED seminars and Podcasts with various medical professionals on the subjects of endometriosis, chronic pain, and fatigue. 

I have also throughout the last couple of years met other women within my endometriosis support group and discussed with them their treatments and numerous surgeries, and whether they have found these to be beneficial. 

I also see a multitude of endometriosis, fibromyalgia and chronic fatigue cases on a weekly basis working as a medical secretary. 

What I have found is that in the majority of cases women with endometriosis are not finding much relief from hormone treatment, pain medications or surgeries, and if they do it is not for long. Sometimes the hormone treatments, pain medications and antidepressants prescribed cause them more problems than they previously had. 

They also cause them to gain weight and put them at risk of other comorbidities. It is much the same for women and men suffering from fibromyalgia. 

They find that after a while the multitude of pain killers, antidepressants, muscle relaxants, anticonvulsants, antacids, and IBS medications are no longer working the way they used to. 

They then have to add in another medication or switch medications, which often causes yet more side effects and weight gain. Again, after years of taking all of these drugs they start to suffer from other comorbidities due the multitude of drugs they have been taking.

The importance of alternative therapies & diet!

Although some kind of pain relief in the form of pharmaceutical drugs is sometimes essential in order to function, there are lots of natural alternatives that can help to control the pain in place of some of the drugs. 

I myself have been on and off Omeprazole for acid reflux for almost 8 years now and I occasionally used Paracetamol every 4 hours as I can’t take anti-inflammatory drugs. 

In terms of hormonal treatment for endometriosis, I have tried it and synthetic hormones of any kind mess with my body and more importantly my mood. I discussed this with my consultant after my surgery and he didn’t push me on taking hormones, as he knows that in my case my quality of life would be way worse than it already is. 

This is of course different for all women. I personally am more interested in alternative therapies and diet for easing of endometriosis and fibromyalgia symptoms, not only because at the moment that is all that is available to me but also because I believe that these pathways of treatment should be explored and offered more freely by health professionals upon the first diagnosis of chronic illnesses such as endometriosis and fibromyalgia.  

It seems that you need to be on or at least have tried a multitude of drugs until you are offered alternative therapies or dietetic advice. 

Hence the reason I have been looking into alternative therapies and diet myself. 

So far, I must say that just making changes to my diet, trying to keep stress levels down and engaging in the exercise of some kind, makes a difference to my pain levels. 

It doesn’t take it away completely, but it definitely turns down the volume and I have more low pain days, as opposed to high pain days. 

I know that my care through alternative therapies could probably be optimised even further in terms of both my endometriosis and my fibromyalgia pain, through pelvic physio, acupuncture and maybe if I was given a graded exercise plan to follow to help me to rehabilitate my muscles, but unfortunately due to the current Covid situation, I have been unable to have any of these things done through private clinics let alone NHS!

I am sure that there are other fellow chronic illness suffers out there who are experiencing the same frustrating problems with regards to their care during the pandemic.

Whether it is alternative therapies care or surgical treatment that they are waiting for. I just feel extremely lucky that at least I managed to get my endo surgery done 6 months before the pandemic started and I have huge sympathy for all of those endo suffers who are still waiting!

Even so, I still feel a bit abandoned with respect to post-surgery care!

The importance of counselling for chronic illness!

A couple of years ago, before I was diagnosed with endometriosis, I was struggling with my mental health so much that I had started to self-harm and was suicidal. 

I was struggling to function at work because I felt so ill all of the time and this caused me further anxiety which was sending me off the rails! 

I self-referred myself to the NHS Talking Therapies Service, having already been seen by them on different occasions over the previous few years for General Anxiety Disorder and OCD. 

I explained to them that I was experiencing multiple health problems and was under the gynaecologists for possible endometriosis. 

Luckily because of my circumstances, the fact that I had been seen by their team previously twice before and the new possibility that I had a health condition that was causing my anxiety and depression, I was referred to a counsellor who specialised in chronic illness and pain. 

I can honestly say that I found this kind of counselling the most helpful of all because it got to the root of my problems and helped me to manage all the feelings that people with chronic pain and illness often feel. 

In my case I was feeling a sense of loss of a life that I once had, the loss of opportunity of being a mother. I was feeling anger, frustration, anxiety and fear for the future, and terrible guilt and sense of failure for no longer feeling like I was a good wife, a good daughter, a good dancer, a good teacher, a good worker, a good friend etc. 

These were all feelings I was dealing with on a daily basis because of my physical illness and because I could no longer cope with trying to be good at everything anymore. 

I was letting friends down as I was unable to go out and meet with them, I long gave up trying to teach and perform dance, I couldn’t go out for long even with my husband because I would be in too much pain, we stopped eating out because I had such bad digestive problems, I could not any longer enjoy sexual intercourse with my husband because it was too painful, I regularly had a day or two off work when I had a period and felt like I was letting them down too. 

I spent less time helping my parents out with things, as I could barely get through the day trying to work and look after myself. 

I felt like a failure most of the time and was going through a constant cycle of mental and physical torture. 

My therapist helped me to deal with all of these overwhelming feelings and thoughts I was having. She helped me to accept my present situation but not resign to it. 

She helped me realise that I was not a failure for being sick, that I was doing everything I possibly could, and sometimes more than I could deal with. I actually needed to pull back from trying to keep up with the high expectations that I expected of myself. 

It was almost like I was in denial and didn’t want to admit to being so ill because of a fear of what other’s would think of me, but also because I feared for my future living with a chronic illness.  She taught me to pace my life and to have compassion for myself. 

The therapy sessions took quite a few months and it was not easy to accept and change the previous perceptions and thinking habits that I had had, but it got me through the worst times and kept me functioning and working up until my endometriosis diagnosis and surgery. 

If it hadn’t been for those therapy sessions, I can honestly say I don’t know if I would still be here! 

Although I still reflect on my sessions with that particular therapist in my dark hours to help get me through, it is not the same as having continued support from a professional source. 

It is a shame that continued counselling support specifically for people with chronic illness is not something that the NHS provides as a package of continuing care. 

I feel that it is an extremely valuable part of care for chronic illness sufferers.

A light at the end of the tunnel…

Let’s all hope that we can get out of this Lockdown soon and that care and treatment for chronic illness resume by the spring so that we can all start trying to move forward on our journey with chronic illness.

I will of course update you with anything new I discover that may be of help or interest to you in the months to come, but until then no matter what hardships come your way and how hard you are knocked backwards in terms of your illness, keep fighting and keep getting back up. 

We will get out of these incredibly dark times, and we must try to stay motivated to get our health back to a decent level so that we can enjoy life to the fullest we can in the future!