“Issues to deal with…”

So this will likely be the first “published” post from this set. 

I received the following as part of a long text message a while ago and I suppose it struck me that people, despite all efforts, don’t always understand others.  

“You know what, this is always going to be made to be about you, how you feel, how you were ill etc yes I get that but we all have issues to deal with too!”

Let’s take just part of that statement first “issues to deal with too!” I can’t give you an example of these “issues but dictionary definitions suggest “problems” something that requires attention to “fix”. 

Let’s be clear my illness wasn’t an “issue” it was a serious impact of a chronic condition (a persistent, long-lasting health issue that generally cannot be cured but can be managed through treatment). 

So I pondered my options here, because let’s face it there are many ways to handle this kind of comment. As such I took my time and decided that maybe if the person had listened then they would’ve understood more about those conditions and how serious they are but also how they interlink. As a result I’m hoping that what I write next might help just one person be more educated but more importantly might help just one person not have to feel the discrimination of having a life altering condition referred to as an “issue”! 

So the conditions I’ll write in some kind of order - starting with the diabetes (type one) - basics are straight forward. We don’t produce insulin so we inject it (via whatever method you choose). Without insulin the glucose levels can rise which puts you at risk of DKA (https://www.nhs.uk/conditions/diabetic-ketoacidosis/) which is hugely dangerous. HOWEVER too much insulin puts you at risk of hypoglycaemia which is just as dangerous! 

The NHS website gives lots of information about all of these but from a personal perspective hyperglycaemia (High glucose) causes me to feel crappy. It leaves an unquenchable thirst and makes me feel exhausted, like I’ve run a marathon two days before. My muscles ache and I feel sick.  This is caused by a range of factors - being unwell; stress; missed or wrong insulin dose…but everyone reacts differently to their own triggers. Whatever it might be it can be very scary. 

Low blood sugars are just as frightening as they come with their own symptoms. For me the feeling of hunger is a regular one when my bloods are low its like no matter what you eat its not enough and for me tracking what you eat when hypo is hard so you've no idea what to bolus afterwards!  I also frequently experience dizziness; confusion; blurred vision and feelings of anxiety. Occasionally i get heart rushes and shanking but for me these are few and far between. 

An untreated low blood sugar can lead to fitting (seizures) and falling unconscious. 

For me the big thing about diabetes is their is so much that people don’t realise - the prescriptions are like a shopping list each month…the resilience it takes to get up and crack on after  a night of fluctuating blood sugars even though you’re exhausted. Having to eat when you’re not hungry or having to wait for insulin to get in when you’re hungry! The paperwork! Driving licenses and prescription cards that absorb hours of your day that they shouldn’t! People who ‘skip’ the system or the system that doesn’t hold everyone to the same account…But the biggest one is the daily decisions on a micro scale knowing that every time you take insulin you’re making big decisions and hoping the information is all spot on and it will work out ok!! 

Asthma - I was diagnosed with asthma at an early age. I currently take two inhalers one daily and one as and when needed. Although generally well controlled when i am ill with a respiratory illness it can be very debilitating. I have many memories of such incidents but that would take a while so i will focus on this year for now. I started with a cough on December 27th (i assumed it was cold air) This continued over the new year period and into the early weeks of January. I was diagnosed with a chest infection and was provided with antibiotics (i know not everyone believes in them and thats up to them but i used them and for a short period felt better). I took the full course as instructed. After a couple of days i started feeling unwell again, generally just very tired and unable to focus. I managed for a few days and then made contact with the GP again to ask for another checkup. I was told they believed i had another infection and my respiratory rates were low. I was given a different antibiotic and extra inhalers to try and cope. 

This infection became one of those where going upstairs made it hard to breathe, being outside in cold air or windy conditions made it hard to breathe etc. It was a choice between talking and breathing in difficult conditions. (One of the prompts for me writing this was that someone objected t onto being acknowledged when we were outside but to be honest i was focusing on breathing as it seemed more essential! More on that later). The following week i was really struggling and my SATS became so poor i was sent to Accident and Emergency where i spent several hours being checked for lots of very frightening things. Pin the end i was sent home on steroids and a third choice of antibiotic! 

Now here is example number one of the difficulty of more than one chronic condition - the steroids and the blood sugars are sworn enemies. After taking the steroids my blood sugars hold their own for two maybe three hours and then they start to loose the war. The bloods start going up, up, up and theres no stopping them. During the first set I was using the equivalent of 3 days insulin in 36 hours or less…thats A LOT! The steroids put up.a good fight and can win the war for many hours like 12 plus. Then the insulin starts fighting back and the bloods start to drop, FAST! 

Now the thing about steroids is that depending on when they are taken depends on when the falls happen, generally it is advised to take them in the morning. So when the fall comes it’s can be anything from early evening to the middle of the night which means no sleep. 

The next fun thing that i have to consider is the other medications i take because some of them cannot be taken together. Timings become essential, phone reminders and naps through the day…if possible!

Hypothyroidism

So this is a fun one - this is basically a gland that stops producing the required hormones.  

The hypothyroidism is one that was difficult to diagnose i presented at the GP with exhaustion, feeling very low and feeling cold all the time. The GP firstly took the usual bloods and couldn't come up with anything. We went back and forth for weeks and weeks seeing different GPs all with no answers. Lots of questions about my lifestyle, how i felt my mood was,, whether i was eating properly but still no answers. 

One morning i was in quite a bad state and so my mum made me an urgent appointment later in the day. We saw a stand in GP who immediately asked me a handful of questions and to be honest i was a bit hesitant as i thought usual response coming  but then he sent me for blood tests. All the usual ones but with a couple of extras thrown in. 

He rang a couple of days later to confirm he had diagnosed hypothyroidism and asked if we could go back in to go through the plan. 

I was immediately placed on levothyroxine and over time i slowly improved. There are days when things happen and the symptoms reappear or the medication needs a tweak and they reappear. Symptoms for me include the exhaustion, feeling cold a lot, brain fog, hair condition changes and my nails weaken. I also have bouts where i struggle with my mood and feel anxious a lot. Since taking the thyroxine i also struggle to lose weight no matter what diet I'm on!

Most of the time the hypothyroidism sits in my day and causes the least trouble as long as i maintain the medication although that in itself has requirements and cannot be taken with other medications.  

Pernicious Anaemia 

The diagnosis of this one was really scary. I had been on iron tablets since my pregnancies as my levels were frequently low. One day four years ago i felt dreadful i had been unwell for days but assumed i was run down or ‘burnout’ was occurring. That is common with the other conditions i have and so i cold explain it away. 

One Tuesday morning i felt like i couldn’t breathe and my heart was racing without explanation. I stood up to go downstairs and felt very dizzy and uncoordinated like my brain wasn't talking to my muscles correctly. I had a headache like there was a jack hammer in my head and my vision was blurry and unfocused. I had talked myself into a panic as i had pins and needles all over, and i started to vomit so i rang my husband to come home. My mum also arrived to support me. A later appointment told us that it was a panic attack and that it would be recommended to seek support. 

This felt wrong but we followed the guidance. Then another attack came in the middle of the night. I woke convinced i was having a heart attack and i was terrified. 

After a very long night i managed to see my own GP who again referred me for blood tests. This identified  concerns and so i was sent for more tests. After a week or so a phone call to return lead us to and urgent appointment where i was diagnosed with PA. 

There are various causes for PA but the longer it is left untreated the worse it gets and the damage is irreversible. I was advised it was another chronic autoimmune condition and that it affected the stomach. The immune system was attacking the cells that produce a factor needed to absorb B12. 

So i had a week of injections then a break then another week of them. The injections themselves have some pretty bad side effects. As they are an IM injection the site is often itchy and painful post injection. They can ,make me vomit or feel like i will vomit and they give me headaches. The headache often is accompanied by dizziness and confusion. Although they don't last long they are rubbish at the time and can make it difficult to function. After the second week of injections i was moved to one every 12 weeks but this was found to be insufficient so now i take one every 8 weeks. These are done by a nurse and are the pain, panic and symptoms often mean my blood sugars react unpredictably. 

Myalgic Encephalomyelitis (ME/CFS)

Around the time of the PA diagnosis i was also sent for an ME assessment. 

So this one was another challenge as all the symptoms could go with other conditions i had but could also be something completely new. I had several symptoms and as such was sent to a fantastic consultant who was cautious, listened and offered support as needed. 

I started off with extreme flu like symptoms that just wouldn’t go away. I had lots of tests for flu taken but all came back negative. I had pains in my muscles and felt exhausted like never before I would sit down and be asleep in minutes if not seconds but i would wake up still feeling rough. I had also developed a constant sore throat and headaches that were like migraines making me dizzy and sick. I would go to bed to ‘sleep it off’ and be left with disrupted sleep and wake up still feeling like i had not been to bed. 

These were just some of the symptoms I experienced at first i also developed problems with concentrating or thinking again similar to like a migraine where sentences are difficult and i constantly had brain fog. I have episodes of PEM which depending on the exertion and  can take days to get over and just for good measure i occasionally get the rapid heart beat. 

There is no set treatment for ME and as such there is advice and support on creating a plan to manage symptoms. Linked in with all my other conditions the ME has become the biggest battle yet.  

I also have some other conditions. Right now these are still very personal and as such I don’t think i am ready to share much about them but when i am it will drop here!