Dealing with people’s reactions to Endometriosis

How to deal with the disgust when you explain to a person what endometriosis is. I think it is hard not to take it personally.  It is one thing for a person to say ‘that is horrible, sounds really shit to live with’, because you can open a dialogue there or nod and move on without feeling down. The period and the female reproductive system  is something that causes nose wrinkling and hand waving to shut up at the best of times. To talk about those things having problems that come with a whole host of other horrible symptoms even more so. Yet, there is no reason that we should be silenced. There is no reason that society should be able to talk about re-setting a broken leg and not about needing to take depo provera injections to try and manage endometriosis. I think the only way society will be forced to get over the stigma it has with women’s menstrual cycles and the complications some face if those who experience these things talk about them more often and more publically. The public doesn’t often hear or see periods or mentions of uteri behaving badly unless it has to do with pregnancy and a baby being in trouble. Or it is like scenes from Carrie where people are mocked and have tampons thrown at them. Fantastically realistic isn’t it?

So, people don’t talk about periods or pain or problems and they don’t talk about endometriosis. This means when someone gets diagnosed they can often find no one around them actually knows what it is. Explanations make people recoil in horror, stating that is disgusting, and that can often leave the sufferer feeling embarrassed, isolated, alone or perhaps like me really freaking angry. I think it can be hard to open up about this disease because we all know how society is and to then get treated that way when you do hurts badly. It makes talking about it to someone else harder perhaps. Personally, to be blunt, I have no fucks left to give. I rarely do with my health these days just because my whole set of endo gremlins took me so far down a black hole of illness. I say it as it is. I do know that for others and for me before this is a huge obstacle.  If we don’t talk about how we feel though we end up bottling things up and feeling crappy. Or people start to come  up with their own ideas about what is or is not wrong with a person and that really sucks too.

So to answer the question, I think it comes in steps and the first is to stop being disgusted by the disease ourselves as those that suffer with it. I truly believe that when I accepted all the horrid things it caused myself I could see the horror recoils for what they were, immaturity often and then a lack of information. I think for a long time the disgust got to me because I felt it too. It was like a reminder and an initial dip in emotion. Now I don’t feel that. Yes, it is horrible to live with but that is entirely the point. The patient lives with it, not  the person recoiling away. I refuse to be ashamed of the fact that my endometrium is flawed and causes me problems. I refuse to be ashamed that those symptoms can involve anal pain and crippling cramps. I refuse to be ashamed of natural occurrences within my body. I lived with the shame of being diabetic for too damn long and I won’t do it again. Remember that the response is their problem and not a problem with the person suffering.

Finding that inner determination is hard but I do think it is important. Embrace the fact that you have this disease. Talk about it, keep talking about it and especially talk in front of those that are recoiling. They need this information. So many people I’ve spoken to recoiled in horror and then kept listening because actually, some of those signs sound familiar and maybe they should see a doctor too. It might be endemitriosis and it might be something else but sometimes hearing someone else say everything isn’t perfect makes a person realise neither is their cycle but they can do something about it.

Stats vary as to how many people they feel have this disease but a decent figure is 1 in 10 but it is probably more because people who have a menstrual cycle are brought up in a shame culture and discouraged from talking about it. If we did more of us would see that something is not right and get help for a whole number of ailments that make people’s lives miserable when they don’t have to. Why is it that for many it is only when fertility becomes an issue that people are willing to intervene? A person with a uterus is far more than their possibility of growing a baby in it.  People think I only care about endometriosis because it might impact my fertility, especially as it went untreated for so long. They think that is why I pushed for the diagnosis. No, I don’t want to have children. I care because it fucking hurts and I have a paranoia that it is burning a hole through my intestines as I type.  Yet I constantly find myself having to push the fertility card to push my doctors forward. That is unacceptable.

Make it clear that endometriosis is not disgusting but it is really freaking hard to live with for many people. Make it clear that it is not just about periods and cramps but about nausea, headaches, light sensitivity, shooting pains in legs and your bum. It is about constant paranoia about when your period is coming and if it is going to mean you can’t take part in your holiday or an event or any other plans. Make it clear that it is every single day and it is every part of your body. Make it clear that it is serious.

Basically, how do you deal with people who recoil in disgust? You make it as clear as you can that it is a horrible disease with many symptoms a person would never label as disgusting on their own. Make it clear many people have it and they don’t talk about it and get the treatment they need because of THAT attitude. People don’t always mean to be horrible but no one should ever have someone recoil when they disclose something about themselves medically. It is just a horrible thing to do. The cycle has to be broken somewhere and it might be that I, you, or someone you know has the strength to start cracking it a little.

Assertion Therapy

 

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It would seem that diet change blog is still  in the bowls of Word but there you go. Onwards. This week I completed an eight week course in assertion therapy at my hospital. Going into it I had high hopes and a lot of anxiety. The last time I did a course the therapist I generally work with was one of the teachers so I had that comfort blanket. This time I just had to turn up and hope I knew some faces. Luckily I knew a couple of patients from another class but it was still pretty intimidating. I know I glossed on my progress in a previous blog but I think going over it all would be beneficial and therapeutic to me I might add.  I feel like I have made so much progress not just in being an assertive person but as a person in general. I feel far more comfortable in my own skin, more confident and less anxious.  Assertiveness was a week’s teaching in the previous Social Anxiety course that I did and the reason I wanted to do this was because I felt from that single week that it was a route I wanted to go down. Books, blogs and other sources often conflict with each other though and given I made a lot of progress in group therapy before I wanted to try this again.

Originally I hoped I would be on a course like this in the Autumn and Winter of last year but it wasn’t to be and I guess I’m glad now. I would have hated to have turned down a place because I was still getting used to my insulin pump. This course came at the right time for me. I was in a right rut with everything at the end of January. I felt stuck. My depression was worse and I struggled to motivate myself to go out so my anxiety got worse and it all stemmed from frustration with my diabetes that really didn’t need to be there. If I had really thought about it a lot of my bgs were because I eat so close together. I’m a right grazer horse. I didn’t see the HBA1C forming until I went to the hospital and it seemed so obvious. Another blog to come. This course pulled me out of that rut and gave me more structure to my week. The awkward bus times I had to deal with meant I had to take lunch with me. To save cash this often meant leaving the house on another day to buy something to take with me. I could have made up a sandwich of course but for the sake of a pound and forcing myself outside, going to get a tub of ‘add hot water porridge’ was a great thing. Plus when I was there it took confidence to go and use the kettle for that purpose and not just a tea or coffee. It sounds like such a small thing but I got so anxious the first time I did it. The kettle is there to be used though. I had a right to use it. I learned to be more assertive each week just doing that.

Asking for things and refusing things were huge problems for me before this course. I didn’t feel I deserved things or had a right to them. I felt I would be causing trouble for someone and often that was when it was part of their job. I couldn’t flag down a waiter in a restaurant to get another drink because I felt a bother even though that is what they are paid to do. If I wasn’t flagging them down it would still be someone else and it was things like that this course taught me to realise. I have a right to things. Hearing other people talk about how people in their lives took advantage of their passive behaviour made it easier for me to identify where people in my own were doing the same. I felt better saying no to things and not having to justify it.

No is a complete sentence.

People are entitled to their own time to read a book, to rest, to scroll through the internet. Me-Time is a right. I learned to see the ‘Are you busy on X day’ is a manipulative trap. If you say no, people think they have you. It is important to demand why before actually answering the question. People should say ‘I am doing X or I need Y on Wednesday, are you free?’ you know? And just because you are free doesn’t mean you need to give a person your time. Because it is just that, yours. Especially when you are chronically ill. Time where you feel able to do anything at all is precious and it is up to you how to choose to spend it. I learned so much about people’s behaviours and how to react to them, especially when people get aggressive. Basically it is important to stay calm, admit to your faults and to defend untruths. A good way to do that is to get someone to explain why they think you are ‘stupid’ or ‘should have done X’ or should take Y’ or whatever. Often their arguments fall apart, their anger drains and you feel a lot better about yourself. I learned that I can only control my own emotions and reactions, not other people’s and I’m not responsible for their feelings.  If someone is upset because I have asked them to help around the house more because they don’t do what they say that they will, their anger is not my problem or something I have to carry around with me. I stayed calm when asking. I asked them to do what they said they would. I asked a rational thing.

I find myself being so much more relaxed around the house now knowing I’ve taken care of my business and feeling I have the tools to deal with any upset. I’ve vaguely talked about strategies but this is by no means an instruction post.  It has just worked for me. I made a phone call the other day I could never have made before because I felt confident in my rights to what I was asking for. I went out for drinks with a friend and constantly flagged people over to make requests. It feels amazing and I now feel much more capable of taking the steps required to return to education and defeating my social anxiety. It has been amazing and while yes I waited a while for it, I’m really grateful to NHS Scotland for the  opportunity to take this course.

Endometriosis Awareness Month

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I keep meaning to write about alterations I have made to my diet and how I feel better for it and then another idea comes into my head and it is still sitting there waiting and looking sad in my half written folder. Oh dear. Anyway, the reason my food is being bumped yet again is this is Endometriosis Awareness week and as we know, that is one of the gremlins so I felt I had to talk about it and talk about it lots. And lots. Then some more because people DON’T talk about it because OMG PERIODS.

I guess I should start by explaining what endometriosis is and my first reaction is EVIL but that doesn’t really help. Firstly, it is complicated and not the same in every person that develops it. That is a factor that can make it so difficult to diagnose. Most of the time it is a gynaecological condition where mostly cells in the linking of the uterus, called the endometrium, appear outside of the uterine cavity. This causes the sufferer a lot of pain and is often worse during the menstrual cycle and is the most common cause of dysmenorrhoea, a fancy name for painful periods. It can impact those without a womb though, rendering most of this irrelevant, as explained later. Often this is all people will get diagnosed with, painful periods, and packed off being told to take more painkillers. This is a huge problem.

Endometriosis has many symptoms and not every sufferer has every symptom. Pelvic pain is common and can occur at any time and painful and heavy periods are also another common symptom. Other symptoms include pain during sex and urinating, urinating often, throbbing pain in the legs, rectal pain and one of my favourites which is where it feels like someone has shoved their hand up your rear and is trying to pull your insides out. That is not me being funny. The ‘feeling like your innards are being pulled out’ is an officially listed thing.  Chronic fatigue, constipation and a higher tendency to develop other auto immune diseases and certain cancers are also known complications. The cycle can become very irregular in menstruating sufferers and the disease is common in fertile patients with a womb. There is no cure but there are various treatments such as pain medication, hormone treatments and surgery.  What a barrel of fun right? Not really, which is why people with endometriosis are more likely to have depression too.

For years doctors would only give an official diagnosis if the patient underwent laparoscopy surgery and they could physically see the lumps of endometriosis. However, many people were denied surgery because it is dangerous.  As a diabetic, my doctors won’t even have that conversation because the risks outweigh any benefit. My diabetes could easily throw a fit mid operation or I am more at risk of the wound being infected and such. Now, many doctors don’t want to operate but  are more likely to diagnose the disease on the basis of a patient reacting to treatment.  Non invasive tests such as ultrasounds can diagnose some cases but it takes huge lumps and cysts for it to show up and many can have the worst case of the disease and go undetected on an ultrasound. There is also the fact that cysts form and explode and for many this happens between ultrasounds, leaving no evidence but a lot of pain behind.

A combination of GPs not taking it seriously and society making periods a shameful subject so that many in pain never speak up, the average diagnosis can take up to SEVEN  years. And that is only the lucky ones that DO get a diagnosis. So many are living with it and don’t ever get even that.  Some people try and fail to get pregnant, are devastated and never see a doctor and get that diagnosis and reason that might aid them a little or the extra support and advice to get pregnant. Some just think ‘periods hurt, get over it’ like many people tell us with a womb and suffer in silence and yet agony when they don’t have to.  Periods do hurt but there is a limit and if you cannot function and do daily tasks then you deserve a doctor looking to see if there is anything they can do. There is no cure for this disease but there are many effective treatments. Some are extreme and some are very simple.

The first thing a GP is likely to suggest are pain killers. For a start it can take a while to get your GP to commit to the diagnosis of endometriosis. Many symptoms of endometriosis are mimicked with painful periods but it is important to push if you experience symptoms outside of your actual period. It is easy to snatch at the paracetamol but if you have endometriosis you are better with ibuprofen first. The problem is you have cells that have gone walkabout inflaming parts of your body of anti-inflammatory are going to work better than general pain killers.  There is a science based answer there but mostly that is a ‘I’ve been living with this for years and ibuprofen is why I’m still here’ answer. However doctors can give you far stronger painkillers such as mefenamic acid which will get in there and start deflaming things and breaking down the bad guys. They are wonder tablets and I love them. Plus many doctors will still prescribe them to you while you take other treatments. I would say though, if you are taking them alone or with anything else, the minute you see red in your underwear take them. They are not instant but if you can time them they make the world of difference. They are also really damn good on pelvic pain. However, they are huge so if you are someone that has trouble swallowing pills you might want to ask if there is a smaller pill, an alternative or cut them up before trying to swallow! I know they come in tablet form and caplet, both huge but if you find one easier again, just ask.

Most doctors will go to hormonal birth control pills first though, possibly with mefenamic acid or the like or something else. They can regulate your cycle and lighten many people’s periods. A huge thing I hated with my endometriosis before treatment was that I never knew when my period would come. I could go three for four months without a period and then it would appear suddenly and within a couple of hours I would be unable to stand up straight. It was brutal and a source of constant stress because I never knew when it would come. Plus having to run to the bathroom so often to change my pads was a real stress too, and one I’ve seen others have with cups and tampons too.  The pill took away that unknown, lightened my flow when it did come, and took away so much of the pain for a while. The thing is, endometriosis seems to adapt and some treatments only work for so long. Changing pills is common and if you do take the pill and find it doesn’t help, say something! It is absolutely your right to speak up. Just because it isn’t as bad as it was without the pill doesn’t mean you have to go on in pain.  I moved on to depo provera injections after the pill’s effectiveness wore off.  I was referred from my GP to a gynaecologist which while common in many countries is srs bsns in the UK. They felt injections would tackle more of my symptoms but it is all about personal preference. These injections are received every three months and work as a birth control but also manages endometriosis. Many people stop having periods when on the injections or have fewer periods. The majority certainly are not in as much pain and it generally gets good feedback on combating the chronic hip pain many experience so if that is your personal issue, I advise talking to your doctor about it. It is why my gynaecologist felt I’d be better on the injections. I do get some spotting towards the end of an injections run but that is as close as I get to a period and requires no more than a panty liner every few hours to deal with. It doesn’t really hurt either. It becomes more a mild inconvenience which is a new and wonderful feeling. Another hormonal treatment is a form of implant that goes into the womb itself.  I have very narrow cervix so I pretty much rejected that the moment it was mentioned because it can be uncomfortable to receive. However it is active for longer, protects against pregnancy and many people with endometriosis report good results with it and it is definitely worth looking into.  Of course all of these treatments come with their negatives. Make sure you research these negatives and have a good chat with your doctor about how common they are how willing you are to weigh up the pros and cons of each treatment.

Of course, the more drastic treatments are surgery. This can include a Laparoscopy where a surgeon uses keyhole surgery to open up the area in question and can see and at times remove endometriosis cells or cysts. The problem there is with that is one, not all these cells can be seen by the human eye and two these cells can simply reform. It can be a permanent solution for some, last years for others and prove very temporary for others again. It depends on your womb and your lining and how aggressive your endometriosis is. Another surgical treatment is a hysterectomy where the womb itself is removed, thus removing the cause of the endometriosis and the painful cells. This of course renders a woman infertile and unable to carry a pregnancy, and is a serious decision for the individual but it is an option that is there.

 

I have left it to last because I think it is the treatment that people with a womb may find scary and most intimidating and that is the option to use hormonal treatments to trigger the menopause. Some sufferers of endometriosis have physical and mental symptoms with some finding themselves unable to control their emotions, understand their emotions and struggling to connect with others because of their emotional outbursts. Forcing the menopause can stop the menstrual cycle and production of new endometrium cells that cause the pain and also help regulate hormone irregularities people are suffering with. Of course, this has to be done with hormone replacements but for people who feel very much out of control or out of balance this can be an option and a shining light.

As a side note, I do know that for many religion is a factor when it comes to birth control and birth control is often the easiest treatment to receive for this disease. I respect that many will not want to engage with birth control methods and to them I cannot rate mefenamic acid highly enough. It is just a painkiller. I really feel it does wonders when I am in pain and if that is all you feel you can consider, look it up and check it out.

For those that don’t want to take any medications? Heat pads. There are heat pads that are expensive and last hours or you can splash out £20 on one that you can wrap around yourself and put in the microwave. My own one lasts 8 hours and goes unnoticed under my clothes as I go about my business. Life safer.

So basically, endometriosis is a horrible disease and it often impacts on everyday life. People don’t know when they will get shooting pains in their rectum, stomach, hips, or ovaries. Many people with this disease can tell you exactly where their ovaries are and when they ovulate because they feel chronic pain when they do so.  Chronic bouts of pain can happen at any time and with no warning. It is hard to explain anything when in such pain but harder still when it involves the womb or the results of other medications. It is harder still when perhaps you are an individual no one would expect to have a period and the associated pain. Trans* men  and gender queer people may find it very difficult to live with or explain this disease and general ignorance of it as a whole make it all the harder. Periods can be unpredictable and can leave people bedridden when they do come. Plus, people don’t know about it and when they hear a little they certainly don’t want to talk about it. A period is merely a sign that certain people’s bodies are attempting to ready themselves to conceive a child. That is it. It doesn’t say that you can, will or want to. Yet, we create such shame around them. From the moment a person starts their cycle it is something to hide, not to mention, and consequently to be ashamed of. Think of high school. Did you ever see someone look at the clock, realise the time and pull a tampon or pad from their bag before asking to be excused? I think few of us have that experience because people slide things up their sleeves, rush off to lockers or end up with too much blood in one sitting because they are shamed into doing nothing when they need to. How many people have taken a detention without a word for being late to class when they had to change a pad, a tampon or empty a cup? I know I did. Periods come with shame and silence and that is why  there is 1 in 10 with a womb diagnosed with this disease and 1 in 4 suspected of actually having it. That is why it takes seven years of pain, cysts and damage to fertility for people to receive help.

That is not acceptable.

Another important thing with this disease is that it does not solely effect people with a womb. Some people treated for certain cancers can develop endometriosis as a side effect. I am not overly knowledgeable on this but I just want to state that it is possible, and can be just as painful. There is not enough information out there though for those that may develop this disease as a consequence and there is a lot of shame around it. There shouldn’t be.

There are options, treatments and there is the reality that we will always suffer in one way or another. It might be that the treatment doesn’t rid of us of all the pain between periods and it might be taking hormone replacements for the rest of our lives because we had to have a hysterectomy. There is no true happy ending but there is a light at the end of the tunnel and there are many options.

However talking about it as people with the disease is one thing. We need to talk about these things in general to make steps forward though. We need to remove the stigma of periods and period pain. We need to recognise that periods can be painful and difficult and require time off work, many painkillers and a lot of support. We need to allow people to say ‘I’m having a heavy month and it is difficult’ and ‘I need to sit down, I’m losing so much it makes me lightheaded’ and not be judged for these natural occurrences. People DO everything they can I’m sure. No one wants to have everyone looking at them for passing out over blood loss. People take iron tablets and more painkillers than the packets say and hassle doctors. They try. We need periods to be normal so that pain can be normal and abnormal periods can be spoken about. We need to know that athlete had a heavy period when they won that gold medal or that singer thought about pulling out that concert due to cramps. Periods, menstruation, wombs and endometriosis are not things to be ashamed of or pitied for. I spent so many years lying to my diabetic doctors insisting my cycle was normal when maybe if I had admitted I was so irregular and in pain and spoken against my mother saying period pain is normal they might have clicked and I might have been treated earlier They are challenges we need to take and we need support to do that but we can. We can take those challenges and we can do it. Whether that doing it is getting out of bed one day earlier than you thought or making it to work every day you bled or being able to go to the doctor after cancer treatment and talk about this new pain you have developed. We can do it. All of us.

The pillow fort is a great place for people with chronic illness, as endometrioses is, so I’d encourage you to check it out. It can provide a real sense of support and a cheerful brightly coloured website to go to on bad days. They also have a FB community of Pillow Fighters which again, provides so much support and a right laugh too. Plus they sell all sorts of heat pads which are wonder to those with endometriosis as well as other chronic illness inspired treats. Great site, great mag, worth a shout.

First Pump Clinic, HBA1C Wins and Questionable Doctors

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Thursday was a big day for me because it was my first diabetic clinic as a pump user and therefore at a pump clinic. I didn’t know which doctors would be there or if I would know any of them. I knew in advance that because the number of pump users is smaller the clinic doesn’t need all the docs. They appear after lunch to handle the teenage MDI users on a Thursday. It turned out I was right and I didn’t know either doctor. Yes, either as in two. It was the smallest clinic I have ever been part of and I’m pretty sure they only saw around 10 patients overall. It was such a more relaxed atmosphere than I am used to. Usually there are 30 or so patients going through a morning or afternoon clinic maybe? I am guessing but there are many many more than there were on Thursday that is for sure!

The nurses seem far less harassed which was nice and for once there was no awkward chitchat. I don’t like being spoken to while you vampire it up in my arm ok? I get that for some it relaxes them but I just don’t like it and I don’t know why they didn’t feel like chatting this time but I liked it.  I know they need to be fast so I’m pretty good and stripping from the moment I leave my seat in the waiting room and having my arm out to be stabbed by the time by butt is in their chair. Another bonus was the nurse asked if I wanted a plaster and I was able to say I am allergic and get cotton wool and tape instead without  having to do the NUUU DUNT thing I usually do when they come at me with plasters.  I was then sent on my way with questionnaires. I had the usual anxiety and depression sheet which I filled out and then another about my general insulin doses and stuff. I had never seen one of these before but I guess it is a generic clinic thing in Scotland now because it talked about doses at lunch and dinner, ratios and basal rates but the basal had 2 options. Lol…I have 6 different basal rates during the course of 24 hours. It also asked about tablets being taken so it seemed a very general diabetic thing but proved interesting because pumps appeared from all sorts of places while people checked all their basal rates. That was fun. What was infuriating though was when I was summoned to the doctor she didn’t look at the sheet, but asked me all those questions personally to fill out her own sheets.

My weight remained about the same, I didn’t have to do the walk of shame to the bathroom with a bottle to pee in as I remembered a sample, and I got sent out of the second room with booklets. One is about hypos.  I will never stop smiling at getting a booklet on hypos. They give me one every time I go. I have been diabetic nearly 16 years. I think I know what a hypo is by now. I try to refuse because hey, those booklets cost money to print but they insist they MUST be handed out.  The other was about what is expected at a clinic and what is tested with your blood and urine samples and why. More importantly there is a chart of what these numbers SHOULD be so when I get my biochemistry letter in a few weeks I know whether the results are good, bad or indifferent.  I have been waiting years for such a thing. I think if some vampire is going to do a runner with two tubes of my blood and a tube of my widdle the least they can do is explain why.

There was no feet checking person. There hardly ever is to be honest. Part of me is angry because there should be but in all honesty another part of me is relieved. I always fear that I will jerk my feet away because they are so ticklish and screw up my tendinitis in my foot.

Anyway, the doctor. She very much struck me as the sort that had a textbook and I had to fit into it. I was last in and I felt like she was eager to get finished up you know? I didn’t feel comfortable. She asked for my meter, didn’t look at my sheets with all my basals and insulin and ya know, information but purely judged what my meter threw up on the screen and looked puzzled. I immediately said I eat a lot of meals close together so often I know my insulin is still active as demonstrated on the diasend (info from my pump including what my bloods were and what insulin I had and when and what carbohydrates) uploads I had sent the hospital and the worksheets. These are all the things I am asked to do and don’t WANT to do so people like HER can USE IT and UNDERSTAND IT and not make mistakes like look at my blood meter results and think ‘hey that doesn’t fit her HBA1C’. Seriously unimpressed.

She accepted my explanation but I feel I should not have had to make it. A doctor should realise that diabetes is never as simple as what my blood kit throws up on her screen. I hate the sheets they make me fill in. I can’t follow them. I find it much easier to use my uploads on the computer to see patterns and change things but the ‘doctors’ want the sheets. Apparently not.

The reason my results puzzled her is my HBA1C is 53/7.0% or perfect and exactly what my target is. I am sure eventually they will ask it to drop a little but for now it was my target. My blood results are stable, predictable, freakily like clockwork actually. Ideally, there would be less of a peak after my meals. I see a lot of 10s two hours post meal and my nurse is yet to crack that rise but they always return to target. My dawn phenomenon is gone. (well no, it is controlled) I now feel like death with a blood of 14.5 when before my pump that was actually a decent reading. I nearly started crying in the office. This HBA1C feels real. It isn’t fake. It isn’t crashing lows and soaring highs averaging out a reading that keeps me from life but stops me losing my feet. It is real, balanced, and healthy. If the doctor had bothered to look at the sheets I was given at the clinic to fill in, the diary I was asked by them to keep or the uploads send in for them I feel she would have realised that a lot sooner. Plus, frankly, if they had all been 11s and my HBA1C was higher I would have been happy at that too because those numbers are STABLE. Any diabetic who has swung a lot knows how exhausting it is and how it impacts so much of our lives. Stable was all I wanted and it turns out I have kicked more ass than I thought. Brilliant.

She did note one pattern, and that is I am still fiddling with my post lunch basal rate but I explained it had taken me a while to notice it after changing my basals in general because of my mental health slump. She took that as my results being impacted and so refused to change anything and told me to see my nurse in a few weeks. Now I had said because I had, had as in past tense as in I would like to fix it now but she wasn’t having it. So what was the point of going? She seemed more interesting in putting details into the new system than listening to anything I had to say or asking any questions. In fact the thing she took most time over was making sure she had a note of what birth control I am taking for my endometriosis. Depo injections themselves are not an option to tick but injected birth control is but that took a few minutes to work out.

The Doctor totalled up the anxiety and depression scores while on hold on the phone trying to see if I could just go over to medical photography and get my eyes checked. She then didn’t mention them or bring them up at all despite my anxiety flagging as extreme (I added up the scores before I went in. What?)  Whether she knows that I am diagnosed or not (she did), she should still ask about that! Every doctor asks about that! They offer help if they can. They ask if my diabetes is a factor. They do, ya know, their job. But nope, she just added up the number and jotted it down.  She did a lot of jotting things down. I felt like a box being ticked. I didn’t feel engaged with at all. That is not how a diabetic should feel upon leaving their clinic appointment.

I would say I would give her a second chance but frankly with my health I don’t do that. I am ruthless because diabetes is ruthless and I cannot afford to have an endocrinologist that is not with me 150%. I will be asking for a note to go on my notes each time asking for a doctor that is not her. If that means sitting an extra hour waiting then I will read a book. I’d rather wait and get help than walk out early confused and a little hurt.

So in conclusion, having the chance to be in a smaller clinic feels a lot more relaxed and I enjoyed it. I am ridiculously proud of my work with my diabetes and the progress I have slaved over. I will not be seeing that doctor again. I do now feel my diabetes is stable and I can continue working with my anxiety, depression and fatigue in order to return to university in the New Year. I feel less panic about it all and more hope. All the midnight, two am, four am, six am, eight am and repeat tests were worth it . Maybe being stuck to a machine for the rest of my life doesn’t have to be so bad after all.