Yesterday, I felt like I hit rock bottom. I don’t know whether it was the sedation from my procedure earlier that day, but I just felt incredibly overwhelmed by everything that was going on.
What is going on? Well, I’ve had multiple surgeries in a very short space of time, with each recovery taking longer and developing complications. The number of appointments I have (GP, consultant, treatment) are rising, and I find I am spending more time in waiting rooms than I am at home or at work. I have experienced some awful side effects from some equally awful treatments, and am on a variety of medication that I would rattle if you shook me. There are future surgeries, appointments and results that worry me. And of course, there is my biggest worry of fertility and what the future might hold.
It’s all become just a bit much for a 25-year-old.
What triggered this spate of anxiety? I think it was because I have a date for the permanent stage of the sacral nerve stimulation (SNS), which will bring my a lot of relief from my Interstitial Cystitis (I plan on doing a separate piece for this, but trust me, it was impressive the results I got from the trial). But for the first time in my life, I am unsure if I want something that will help me.
You probably think I am mad to be having second thoughts about something that could really improve my life, but prior to getting this, I was actually offered a date before my wedding, but as it was only 3 days after my third laparoscopy, we decided to postpone as fertility and being pain-free was a bit more important. However, looking back I do kind of regret it – back then my bladder symptoms were all over the place and unless I was drinking water or eating lettuce, anything else would send my bladder into meltdown and I’d have incredible urgency, frequency and burning (basically a UTI with no infection). But I was lucky that my urology consultant (who is a top top specialist) prescribed me a drug called Elmiron. This drug, whilst being very very expensive (something like £400 for 100 tablets) and only being available through him, worked – my symptoms really calmed down. I did have to come off it before my wedding as my hair was falling out in clumps and I had regular migraines, but it appears to have had some lasting effect, thus my symptoms are better.
The fact that my bladder is better (not resolved, just better) has made me question if the SNS is something I really want. After all, it is a permanent device under my skin and having it done is like being tied to into have inevitable future operations when the battery dies or the wires move. I start to feel guilty that this eye-wateringly expensive procedure is being used on me rather than someone else who might need it. And then I worry that because I have had to go through a long and hard funding process to get it in the first place, that the consultant will be annoyed at me if I turn it down and I’ll miss the opportunity altogether.
These feelings coincide with feeling guilty and feeling like because my symptoms are better, there isn’t really anything wrong with me. I feel like I’ve over-exaggerated and I play back appointments and consultations in my mind to make sure I’ve said everything right.
Does anyone else feel like this? Does anyone else feel guilty for being chronically ill, but then question everything? Do you find it hard when you become better? Do you feel like you have to validate your symptoms and illnesses to yourself as well as everyone else?
I don’t know why we do it, but it is a common occurrence throughout the chronic illness community. Perhaps it is because we fight so hard to get a diagnosis in the first place that it is hard to take in when things get better. Or maybe because our conditions are not so well heard of, we constantly raise awareness and that’s hard to do when things are going ok.
As I led on the sofa with my husband, getting more and more upset, the words “perhaps you need a break” fell from my husbands mouth, and I realised that maybe I do. I am so lucky with my husband – he is amazingly supportive and kind and caring, and he’d support me whatever decision I made. He has stood by me when things have got really out of hand and probably would be too much for others. Even though it feels like he might be my carer at times, he loves me no matter what and I love him more than I could ever describe.
I’m not saying no to any more treatment or medication, and I am still a bit undecided about the SNS, but I don’t think unless my husband had said those words I’d even have thought of it myself. I’ve spent most of my adult life being poorly, operated on or going through treatments to minimal avail. I’ve spent my working life pushing through the pain, making up time for appointments I’ve attended or validating my illness to other people who won’t ever understand. And has it made me feel any better? I don’t think so (although I will always be proud of the fact I got back to working full-time). I actually realise how many times I was banging my head against a brick wall and how you changing other peoples perceptions is unbelievably hard, if not impossible. Do you have any idea how draining it is having to repeat your story or your reasons over and over again? Or how draining and almost depressing it is to sit in a waiting room full of much older people, being repeatedly told by a consultant “we can’t cure this, it’s about managing it the best we can” or “we’ve run out of options” or to have someone tell you how sorry they are you’ve been through or going through all this?
It’s incredibly draining, if you hadn’t already realised. A chronic health condition can be completely consuming. I spend a lot of time analysing my symptoms, taking medication or trying to fit my life around whatever I am experiencing. I hardly ever let my pain or other symptoms get the best of me, but maybe it’s time I just put a break on things to enable me to enjoy life without having to worry my health.
The other thing that is hard to come to terms with is how uncertain things are. For me, the biggest part of this is fertility. I have no idea what is going to happen when we get around to starting a family and it sometimes feels like I’m running out of time. My consultants have agreed that we need to start trying for a family sooner rather than later, and after my last operation it was advised that unless we start trying right away, the Endometriosis would grow back and I’d have to go back into the menopause to prevent it. So currently, whilst I am hormone free and not in the menopause (due to other reasons) and we’re not rushing to have a baby, there is the constant fear that the longer we leave it the harder it will be. I don’t even know if I am strong enough to cope with trying to get pregnant – how long will it take? How will I deal if each month ends with a period rather than a positive test? What about miscarriages?
There is so much information flooding my head that I sometimes want to wake up with no health problems at all. I’d give anything to be healthy and I wouldn’t wish these illnesses on anyone else. I know I’ve come through a much stronger person, but I feel it is important to point out that you can’t be strong all the time.
And that’s why I am writing this article. I want to say that it is ok not to be ok. It is ok to have bad days and down days. It is ok to feel like it is all getting too much and wanting to stop. It is ok to ask for help or shout a bit to get it out of your system.
Whilst I do feel like a strong person, much stronger since I have been poorly, I am tired. I am tired of fighting and going to appointments and trialing treatments, and I am tired of dealing with peoples misunderstandings and perceptions. And the thing with invisible illnesses is, unless you tell people how you are feeling, then no one will actually realise. There are a lot of people out there that have no idea what I’ve gone through and how it affects me, and I’ve decided to keep it that way – I cannot be bothered to repeat my story and have peoples questions and looks. Despite the fact I often want to tell people “do you know what it’s like living like this all the time?”, I feel like at the moment that just causes me to focus on all the upsetting things like pain, fatigue and what I maybe struggle with.
So even though you may read my articles, see my posts on Instragram or even know me, and you may see me working or going out to enjoy myself, you now know what life with a chronic illness really is like. It’s hard and frustrating and full of unanswered questions. Its full of ups and downs that no one can tell you about, and it takes so much energy just thinking about attending an appointment can make you exhausted.
So I think I’m going to have a break. The illnesses and symptoms will not go and will still be challenging, but I want to focus on being me.
These illnesses will not define me.