Day 2 (April 2) – Introductions
ØIntroduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?
Well the very reason behind my blog name is that I have many issues and they are all connected to my Endocrine system in some way. Well, apart from my eczema but that is more of a pain in the arse than a big issue. I shall go through them and wrap them into nice explained bundles…hopefully.
- Type 1 diabetes. As of yesterday I have had this disease for sixteen years. I was six when I was diagnosed so I don’t really remember not being diabetic. For those who are not familiar with it, this is an autoimmune disease where my body attacked the beta cells in my pancreas that create the hormone insulin which is in charge of converting carbohydrates and sugars into energy. As a result I must manually take this insulin myself and monitor my blood glucose levels as my body no longer does this for me. That is it in a nutshell. Out of the nutshell it is a whole lifestyle of everyday challenges. I’m not going to explain it all because I’d be here all day and hey, hopefully my blog will give readers a decent picture over time but as for the give things I want people to know, let’s give it a go.
– Type 1 diabetes and weight are not connected. Insulin can lead to weight gain or the struggle to lose weight but being overweight does not lead to someone developing type 1 diabetes. Weight is only related to type 2, and so what I did or did not eat before my diagnosis has nothing to do with my diabetes. There is nothing you can do to prevent the onset of type one diabetes, sadly.
– Type 1 diabetes is invisible and far wider reaching than many understand it to be. It can cause everything from fatigue to loss of concentration or memory loss. Many days it might not seem that a diabetic has done much but the fact is that a diabetics body works a heck of a lot harder to do the same everyday things as someone else’s body does so we can become fatigued. It isn’t just about what the numbers on the monitor say; that doesn’t define whether we’re having a good day or not.
– Being a type 1 diabetic automatically makes a person more likely to develop other autoimmune diseases. It is important to understand the most likely issues to creep up for a diabetic because there are some things that we can do to try and hold things off. For others, it is simply a case of luck and whether it is on our side. It is important to be aware of these things, I think, so that if a diabetic does start to feel symptoms of something it is important not to just assume it is their diabetes. Many conditions have similar symptoms and we don’t have to live with it. Awareness will help get people checked out and perhaps on medication that can help make lives easier again.
– A diabetic doesn’t get time off. Even those that are deemed irresponsible and don’t take all their medication are always aware of it. I’ve said before that I don’t believe many diabetics every truly feel ‘ok’. Even when my glucose level is perfect, I’m having to think about what is going to happen next and how I maintain that. If my glucose isn’t perfect, chances are I’m going to feel ‘off’ in some way. Whether I’m overly aware of that or not depends but it is still there, at the back of my mind. I live in a whirlwind of predictability and questions. Why am I this? Where am I going? How long will it take? Am I walking enough to need more carbs on board? What medication should I take? How warm is it? Will this impact my levels? All the questions all the time at a conscious and subconscious level. There is never a day off, never a moment of peace. That is what is tiring, depressing, anxiety causing and really hard to live with. You can’t just take your insulin and be ok and forget. It doesn’t work like that.
– Yes, I can eat that. All of that. Any time I like.
- Hypothyroidism. This would be the first autoimmune disease that crept up on me probably because I was already diabetic. Thyroid levels are monitored by the diabetic clinics because they are waiting for this to happen to many of their patients. Cheerful. My levels started to dip from the acceptable rate just before I started to feel strange symptoms. The reason I’m passionate about people being aware of the possible autoimmune diseases with their similar symptoms is because I wasn’t and put it down to my diabetes and it wasn’t for a convenient clinic trip that caught the dipping level and asked for monthly checks as a result I would probably have suffered in silence for ages because I have a history of that. Everything and its aunt is ‘because your diabetic’ in my life so I didn’t think. Basically, my thyroid isn’t producing all the hormones that it should (wait…this sounds familiar) and as a result I need to replace them myself (….!) by taking tablets. In theory this returns the levels to normal. That is all good and dandy. My blood tests are now better than my mother who doesn’t have any issues with her thyroid but the symptoms remain. For a little gland, a wonky thyroid can do a lot of damage so I’d like to do a bit of educating.
– Everything from tiredness, irregular menstrual cycles, difficult concentrating to sensitivity to light, vertigo and having dry skin can be symptoms of thyroid problems. If you suspect you have an issue bring up everything and everything ‘off’ about yourself to your doctor. Seriously, it might not seem connected but it might help convince your doctor that there is an issue at hand and yes they do need to do some detective work.
– Medication can help your blood chemistry levels but does not always alleviate the symptoms. Some people are lucky and feel a big difference and some of us are not. Just because I take medication doesn’t mean I am ‘fixed’.
– Like many illnesses, hypothyroidism varies from day to day. Some days I will feel very few of my symptoms and sometimes I will feel them all at once. Sometimes that just happens and there is nothing I can do about it. It is important to manage hypothyroidism though and know my limits. If I feel good one day and use up all my energy, chances are I’m going to be exhausted the next day. On some days I’m not hypothermic at all, some days I’m very warm, and other days I’m like everyone else. I can’t predict those days, just react to them. Thyroid issues are about give and take.
– Light sensitivity is a big deal for me personally. I really can’t handle a lot of bright lights. I struggle more with what most people would think of as overcast days than I do on days when the sun is just out fully. It is about the glare. Snow days are terrible. I often have to wear a hat or sunglasses and it gets me a lot of strange looks. It physically hurts though. It causes headaches and sore eyes. Acceptance of this and people not gawping at me would really help my self-esteem with this illness.
– An underactive thyroid doesn’t always mean uncontrollable weight gain. Putting this in here because I know a lot of people fear it but I’ve had this problem for a few years and managed to do my health plan and lose two stone and then keep it off just fine so there is hope!
- Chronic Fatigue Syndrome. This is linked both to my diabetes and my thyroid but more so my thyroid. It is a big gremlin in my life right now. It is what it sounds like, being fatigued to a chronic extent. When I first came down with it all I slept 12 hours a day, had several naps and couldn’t walk to the end of my street without being exhausted. My thyroid mediation has had no impact on it. I’ve just had to be patient and push it as far as I can and with time I have seen improvement. If I push myself too hard one day I will be out of action the next so I need to find balance. I started with denying myself the naps and then once I could cope with that, doing ten minute walk a day and then two ten minute walks and then a twenty minute walk and pushing it on. It was a long and heart-breaking process and I get so frustrated with this illness. A lot of people tell me that ‘everyone is tired’ and it is a phrase I hear from my own family a lot. This isn’t just tiredness though, this is chronic fatigue, a serious illness that takes a dedicated health plan to push back. My goal at the moment is to get to only sleeping 10 hours a night but the worse my diabetes is the harder that can be so I’m currently swinging between 11 and 12. I’m always tired and yawning and that is just my life now.
– How tired I am is neither normal nor my fault. I can do some things to control my CFS, such as making sure I don’t overexert myself and challenging my limits to try and increase them. Overall though, if I am tired I am tired and going to bed earlier isn’t going to fix that. How kind my thyroid is feeling, what my blood sugar levels are, how anxious or depressed I am, what my endometrosis is doing and my CFS itself can all impact how fatigued I am on any given day. Hardly a barrel of laughs.
– Many people do not recover from CFS, only on average 5%. Despite what my family hope for, it is unlikely that this issue will ever go away and I just have to adjust my life and carry on.
– Being more active helped me feel less tired. I’m sure many have heard that from doctors and thought ‘no way, that won’t work’ but for me it did. Like I said, it started with the ten minute walks and increased until now, if I prep for it and make sure it is the only activity of the day I can now go down the street or up to the shops and walk around for an hour or two just like everyone else.
– CFS is both mental and physical. Sometimes I might be physically still able to get up and about and take the dog out but may struggle to mentally engage with things. Sometimes it is the other way around and I can think clearly enough but am physically exhausted. I may ‘seem’ ok but look deeper.
– CFS has similar symptoms to many other illnesses. It can be difficult to diagnose because of this and there is no medical test to prove it. A lot of the time it is diagnosed by eliminating the other issues so it is important to keep pushing for answers.
- Endometriosis. It is a gynecological condition where the lining cells of the uterus get detached and appear outside the uterus. These cells can attach to various body parts from just the outside of the uterus itself to pelvic bones, intestines, lungs and even the brain. They can erode and do serious damage to these areas and the cells can at times clump together and form cysts which can then rupture and be very painful and dangerous. This condition is far too explain to sum up in a few sentences so if you want to know ore or suspect you may have it, I’d look it up on the internet for better information. I’m still learning about it myself. Many want to have it named an autoimmune disease so looks like it is all linked again huh?
– On average 40% of women with endometriosis are or become infertile. It is pretty serious so if you suspect you or anyone you know has it, the quicker it is diagnosed the better chances women have of limiting the damage.
– It has a boatload of weird and wonderful symptoms. Fatigue, constipation, leg pain during menstruation, chronic menstrual cramps, and pelvic pain are all symptoms of this disease. Society suggests to many women that pain during menstruation is normal but chronic pain is not and women don’t have to suffer it.
– There is no cure. Endometriosis can be treated in many ways such as with hormone treatment or surgery to remove the damaged tissue and cells but with surgery and fertility risks for example women risk doing more damage to their uterus by trying to remove the cells than might have been done by leaving them. The cells could stick together and form cysts at any time and there is always a danger of that when the uterus is still present because even hormone treatment doesn’t stop the disease in its tracks entirely
– Endometriosis crushes and destroys tissue. On the one hand, that might be uterine tissue in a woman that wants to remain child free and is not worried about her fertility but on the other that could be a woman’s intestines that could end up with a hole in them and then waste products are able to get into the rest of your body. People need to be aware of the risks and make informed decisions about how to treat and manage this illness.
– Some hormone treatments only work for certain amounts of time. So if it starts hurting again, it might be as simple as getting another pill.
- Depression. It goes hand in hand with many of these illnesses and I’ve battled it for years. I guess people know a lot about this problem. I tend to feel better with this when my health is steadier too but I have many things that can trigger my depression that have nothing to do with my health. Part of my brain doesn’t click into place right and sometimes I struggle. I’m ok with that. I’m not the only one in my family to deal with this illness so I’m not ashamed in any way to have it. It is just a part of me. I know that I still have it when I’m ‘ok’ because it never really leaves and can always come back. I think of it as almost being in remission or being dormant.
– Don’t try to fix me because I’m not broken. I’m going through bad times and support is more than welcome but I can’t just flick a switch and be ok. It takes time.
– Whether I take medication and how much I take is not a sign of how well I am. I deal with my depression pretty well right now because I take medication to top up the hormones my brain isn’t creating. I seem well enough. Society would think me better if I wasn’t taking them. I’d be in a right state though. I’ve seen many people fall into far deeper hole than they might have done because they resisted going back on medication because of the stigma attached to it. Sometimes you need a helping hand and that is ok. It isn’t a failure.
– I know my triggers. Sometimes it is better for everyone to walk away from things. Period.
– I’m not less of a person because I have a mental illness. If anything, it makes me appreciate things all the more when I’m feeling better.
– No, I don’t want to hear about that herb you smoked. Personally, I don’t do herbal medicine stuff and am happy taking my tablets and consulting my doctor. My choice.
- Social and General Anxiety. I worry about all the things all the time, in a nutshell. It is a real problem. I’m terrified of people judging me and I hate being out around people. The problem is a lot of anxious people base this on lack of evidence but I have evidence and so it is hard to overcome. I collapsed in the street a couple of years ago with a hypo. I wasn’t actually that low but the symptoms just came on really strong. No one helped me. They saw I was a teenager and I guess decided I was drunk and left me flopping there like a particularly athletic goldfish until I somehow managed to drag myself to a bench and get to my glucose tabs. With my diabetes the way it is, I’m just terrified of a repeat. I worry about people breaking in, people being upset with me, everything. If it is possible to worry about it I do and my recovery is long and slow. I’m making good progress and managing to get out more and cope.
– No I cannot ‘just calm down’. My body is releasing unnatural levels of hormones that are causing me to panic and have a ‘fight or flight’ response kick in. My worry is not normal. My anxiety is far higher than other peoples. The more someone tells me to calm down, the more aware I am of the panic attack and the harder it is to do just that. Be there for someone panicking but don’t try and make them calm down.
– Logic doesn’t apply in a panic attack. Later when I’m calm I will probably realise there was nothing to worry about but not once the adrenaline has kicked in. Anxiety is not logical. Logically I know that guy trying to hand me a leaflet is just doing his job and is no threat to me but on the street with him coming towards me I panic and don’t think logically. I dart away from him and yeah might appear rude. Telling me that doesn’t help me but will probably trigger my depression.
– Don’t tell me to take a chill pill. For a start, I do take a chill pill, two of them and sometimes they are not enough to stop me having a panic attack anyway. That sort of language is vile and people need to stop saying things like that. If you want to help alleviate the stigma of people with anxiety that are seen as ‘worrywarts’ then stop saying things like that. Even if you don’t ‘mean it that way’ it adds to the stigma.
– Worrying is exhausting. That is why I don’t like being out long. My brain is always ticking over with thoughts and questions and worries and trying to appear ‘normal’ and not like I’m about to have a complete meltdown in the middle of Matalan. If I think that someone things I’m, for example, walking funny I will start overthinking how I’m walking and put all my energy into looking ‘normal’ and if I do that nearly all day every day, it is hard work.
– Every time I go outside is a victory. Some things are not a big deal to others but my victories are important for my recovery. Going out when I don’t have to but choose to is a big deal. Going to a pub that has more than 5 people in it is hard. Sitting alone in a café to have cup of tea and a scone is a marathon effort but they are important to me and recognising these little steps for the big steps they are to individual makes a huge different and a great friend.
Phew. I do believe I’m done. Those are the Gremlins! And they all connect to the endocrine system and hormones in some way. Little buggers.