Chronically Jenni
Spreading Awareness & Helping Others with EDS & POTS
The Most Difficult Parts of Receiving Treatment for Chronic Illness
The night before my first Blood Patch surgery, I wrote a piece for the Mighty which has just been published so I wanted to share it with you too. It’s all about the difficulties people with chronic illnesses go though when getting any sort of treatment. Here it is:
On the eve of having a surgical procedure to try and treat an aspect of my condition, I’m anxious.
Anyone would think I’d love to take a week or so off work and be forced to take it easy, but I’m worried about how hard it’s going to be on the rest of my body. I have postural orthostatic tachycardia syndrome and Ehlers-Danlos syndrome. A really difficult thing with a chronic illness is pacing. Doing too much can make you too ill to get out of bed for a few days, doing too little means you body becomes deconditioned which can make you too ill to get out of bed for a few days. It’s a vicious cycle. And after any kind of treatment you have to rest up, but try not to rest too much. After this procedure (a blood patch to hopefully help seal up a CSF leak) I have to take it very easy for six weeks and I may have to have three of these procedures, meaning I’m taking it easy until the end of April. I can’t lift or bend normally as it really affects my POTS and my pain, but after this procedure I am strictly not allowed to, I won’t even be able to push myself around in a wheelchair or walk the dog in case she pulls too much, meaning my regular exercise goes out of the window. This worries me, as the last time I just stopped doing things was before I was diagnosed and it was the worst my health has been. I couldn’t get out of bed and my mental health suffered majorly. So I’m worried about finding a way to keep my pacing strong without risking the effectiveness of the treatment and/or a major flare up.
Another difficult thing with chronic illness is that treatments aren’t guaranteed to work or even help. I am worried that it won’t work. It’s taken nearly a year to get my POTS stable enough to have the intracranial pressure monitoring (which I had in November) to find out if I did have a CSF leak, get diagnosed with a CSF leak and find a way of treating it. If it doesn’t work, I will have wasted another four months and three procedures to be back to square one. I worry if it doesn’t work that I will have let myself, my family and my doctors down as everyone has put in their best efforts to help me get rid of my “everlasting headache,” as I like to call it, and my body just doesn’t want to respond the way it should. But we all need to stop feeling so guilty for being ill, it’s completely out of our control.
But the most difficult thing I’m finding about getting treatment as a patient with chronic illness is that, if it does help, friends and family think you’re am cured. And if it doesn’t help, there’s an expectation that it should have helped. My last operation was just an invasive investigation yet people who knew this still thought it would’ve made my headaches disappear. I understand the notion, of course. If you break an arm or a leg, it’s painful, you go into hospital, they plaster you up, you spend six weeks recovering and it’s fixed. When you have chronic illnesses, however, there’s so much more to contend with. I manage my POTS with medication but I rely on it and if I forget a dose I know about it. My EDS causes major fatigue, widespread pain, unstable joints and and gastrointestinal issues and unfortunately I am going to have to live with those symptoms for the rest of my life. Whether this treatment helps to get rid of my “everlasting headache” or not, I will always be chronically ill.
Let’s say you went to the doctor for a chest infection and you happen to also have a broken arm. The doctor gives you some antibiotics which cure you of the infection, but your arm is still broken. My story is just as simple, in a roundabout way. I went to the doctor for a headache and (after two years) they found the cause of the headache. I happen to also have two long-term conditions called POTS and EDS, they did some treatment for my headaches and one finally worked, but I still have POTS and EDS.
With chronic illness, I am often made to feel that if I go into hospital for something I should come out and all my problems should be fixed. But remember you can’t expect antibiotics to fix a broken arm, so don’t expect a procedure for an small aspect of a condition to cure someone of a chronic illness. It’s called “chronic” for a reason.
The Most Difficult Parts of Receiving Treatment for Chronic Illness
I like what you guys are up too. Such intelligent work and reporting! Carry on the excellent works guys I?e incorporated you guys to my blogroll. I think it’ll improve the value of my site 🙂
One more thing I would like to convey is that as opposed to trying to match all your online degree training on days and nights that you end work (considering that people are exhausted when they come home), try to receive most of your lessons on the weekends and only 1 or 2 courses on weekdays, even if it means taking some time off your saturday and sunday. This is really good because on the week-ends, you will be a lot more rested as well as concentrated on school work. Thanks for the different points I have figured out from your blog.
I have noticed that credit restoration activity should be conducted with tactics. If not, chances are you’ll find yourself damaging your position. In order to reach your goals in fixing your credit rating you have to always make sure that from this moment you pay all your monthly costs promptly in advance of their timetabled date. It is really significant given that by not accomplishing that area, all other methods that you will take to improve your credit positioning will not be helpful. Thanks for sharing your ideas.
One important thing is that when you find yourself searching for a student loan you may find that you’ll need a co-signer. There are many conditions where this is true because you will find that you do not possess a past credit rating so the financial institution will require that you’ve someone cosign the credit for you. Good post.
I have noticed that over the course of developing a relationship with real estate owners, you’ll be able to come to understand that, in every real estate purchase, a commission is paid. All things considered, FSBO sellers really don’t “save” the percentage. Rather, they struggle to earn the commission by means of doing a agent’s work. In this, they spend their money plus time to conduct, as best they’re able to, the obligations of an realtor. Those responsibilities include exposing the home via marketing, showing the home to prospective buyers, developing a sense of buyer emergency in order to make prompt an offer, booking home inspections, handling qualification assessments with the loan provider, supervising fixes, and assisting the closing.
Hey there! I know this is somewhat off topic but I was wondering which blog platform are you using for this site? I’m getting fed up of WordPress because I’ve had issues with hackers and I’m looking at options for another platform. I would be awesome if you could point me in the direction of a good platform.
One thing I would really like to say is before buying more pc memory, look at the machine into which it is installed. If your machine will be running Windows XP, for instance, the particular memory threshold is 3.25GB. Installing over this would purely constitute a new waste. Make certain that one’s motherboard can handle your upgrade quantity, as well. Thanks for your blog post.
I’m not sure why but this web site is loading very slow for me. Is anyone else having this problem or is it a problem on my end? I’ll check back later on and see if the problem still exists.
I’m truly impressed by your keen analysis and stellar writing style. The knowledge you share shines through in every sentence. It’s evident that you invest a great deal of effort into understanding your topics, and the results does not go unnoticed. Thank you for sharing such detailed information. Continue the excellent job! https://rochellemaize.com
I’m thoroughly captivated by your deep insights and stellar way of expressing complex ideas. Your expertise is evident in each paragraph. It’s clear that you put a lot of effort into understanding your topics, and the results does not go unnoticed. Thanks for providing this valuable knowledge. Continue the excellent job! https://www.elevenviral.com
Just desire to say your article is as astonishing. The clarity to your post is simply great and i can think you’re an expert in this subject. Well along with your permission allow me to take hold of your feed to stay updated with forthcoming post. Thank you one million and please continue the enjoyable work.
I have noticed that in digital camera models, extraordinary detectors help to focus automatically. The particular sensors with some video cameras change in contrast, while others use a beam associated with infra-red (IR) light, especially in low lumination. Higher specification cameras at times use a mixture of both models and could have Face Priority AF where the dslr camera can ‘See’ the face while keeping your focus only upon that. Thank you for sharing your opinions on this web site.
Your house is valueble for me. Thanks!?
I’m thoroughly captivated with your profound understanding and excellent ability to convey information. Your depth of knowledge is evident in each paragraph. It’s evident that you invest a great deal of effort into delving into your topics, and the results is well-appreciated. Thanks for providing this valuable knowledge. Continue the excellent job! https://www.elevenviral.com
Normally I don’t learn article on blogs, but I would like to say that this write-up very forced me to try and do it! Your writing taste has been surprised me. Thank you, very nice post.
Thanks for the unique tips shared on this weblog. I have seen that many insurance companies offer prospects generous discounts if they elect to insure several cars together. A significant amount of households possess several cars or trucks these days, especially those with older teenage young children still located at home, and also the savings upon policies can easily soon increase. So it is good to look for a bargain.
I’m commenting to make you know what a exceptional discovery my daughter found reading through yuor web blog. She mastered a good number of issues, which included how it is like to possess a very effective helping character to let many others without difficulty understand selected tortuous issues. You really exceeded her desires. Thanks for displaying these important, healthy, revealing not to mention cool tips on your topic to Julie.
Thanks for the recommendations shared on the blog. One more thing I would like to talk about is that fat loss is not all about going on a celebrity diet and trying to reduce as much weight as you’re able in a couple of days. The most effective way in losing weight is by using it slowly but surely and using some basic recommendations which can allow you to make the most from your attempt to shed pounds. You may be aware and be following these tips, nonetheless reinforcing knowledge never damages.
Thank you for another informative website. Where else may just I get that kind of information written in such a perfect means? I’ve a project that I am just now operating on, and I’ve been at the glance out for such info.
of course like your web site but you have to check the spelling on several of your posts. Several of them are rife with spelling issues and I find it very troublesome to tell the truth nevertheless I?l definitely come back again.
I loved as much as you will receive carried out right here. The sketch is tasteful, your authored subject matter stylish. nonetheless, you command get bought an impatience over that you wish be delivering the following. unwell unquestionably come further formerly again as exactly the same nearly very often inside case you shield this hike.
Something else is that when looking for a good on the internet electronics store, look for web shops that are continually updated, retaining up-to-date with the most up-to-date products, the top deals, along with helpful information on services and products. This will ensure that you are handling a shop that stays ahead of the competition and gives you what you ought to make educated, well-informed electronics acquisitions. Thanks for the important tips I’ve learned from the blog.
Keep working ,impressive job!
We stumbled over here different web page and thought I might check things out. I like what I see so i am just following you. Look forward to going over your web page repeatedly.
Today, with all the fast way of life that everyone is having, credit cards have a big demand throughout the economy. Persons coming from every area are using credit card and people who not using the credit card have made arrangements to apply for just one. Thanks for giving your ideas about credit cards.
Yet another thing is that when evaluating a good on the net electronics retail outlet, look for online shops that are consistently updated, always keeping up-to-date with the hottest products, the top deals, along with helpful information on services and products. This will make certain you are doing business with a shop that really stays over the competition and offers you what you need to make educated, well-informed electronics purchases. Thanks for the critical tips I have learned from the blog.
Thanks , I have recently been searching for info about this topic for ages and yours is the best I’ve discovered so far. But, what about the bottom line? Are you sure about the source?
Great paintings! This is the type of information that are meant to be shared across the internet. Shame on Google for now not positioning this post higher! Come on over and discuss with my website . Thank you =)
Heya just wanted to give you a brief heads up and let you know a few of the images aren’t loading properly. I’m not sure why but I think its a linking issue. I’ve tried it in two different web browsers and both show the same results.
You really make it seem so easy with your presentation but I find this topic to be really something that I think I would never understand. It seems too complex and very broad for me. I’m looking forward for your next post, I will try to get the hang of it!
Very nice post. I just stumbled upon your blog and wished to say that I’ve really enjoyed browsing your weblog posts. In any case I will be subscribing in your rss feed and I am hoping you write again soon!
hello!,I really like your writing so a lot! percentage we communicate more about your post on AOL? I require a specialist on this area to unravel my problem. May be that’s you! Taking a look forward to peer you.
Would you be thinking about exchanging links?
Wow, fantastic blog format! How long have you been running a blog for? you made blogging look easy. The total glance of your web site is great, as neatly as the content!
Really great information can be found on site.Raise your business