Symptoms Worse Before Your Period?

I will first apologise to the guys for this one, I usually don’t do gender specific posts, but this one is for those of you who have a, ‘Time of The Month’! 🙂

Recently I have noticed in the ‘WordPress dashboard’, the stats of this blog, that, one of the search terms that lead people to this blog is: ‘Pots worse before period’. So I thought it would be a good idea to do a post for people who have been looking for it.

YES!! in my own experience my symptoms nearly always get worse before my period/menstrual cycle. Any of the symptoms I usually have like, Low Blood Pressure, dizziness, nausea, fatigue and pain seem amplified the week prior and even worse during my period.

It kind of works out that I will have 2 relatively good weeks in the month and 2 where I am extra sickly. It is frustrating as hell but I have kind of gotten used to it now and just go with it. I do what I can when I can, but I have become extra unsocial as a result, I can’t commit to appointments with people these days because my health sometimes will go of a morning, “hey f*ck you, we aint doing anything today, today you stay in bed and be miserable, yeaaaah!” …screw you Autonomic Nervous System! :p

Seriously though, us potsie ladies are not alone. Most women with any sort of Dysautonomia report their symptoms getting worse during their period. I have done a quick run around the interwebs and it seems that the changes in your hormones around this time is what kicks your messed up Autonomic Nervous System reactions into high gear.

I have found an excellent description of what happens your body during your menstrual  cycle and with Dysautonomia, over on Santa Maria Medicine.

menstrual+cycle+Pots+Dysautonomia+Symptoms

What Happens During the Menstrual Cycle in POTS Patients?

 

The menstrual cycle takes a toll on patients with Postural Orthostatic Tachycardia. It’s during the actual 5-7 day bleeding phase that patients will feel the acute loss of blood volume which, of course, will make them feel drained and exacerbate all of their usual symptoms—including, in particular, fatigue.

The menstrual cycle revolves around changes in hormones which are aimed at preparing an egg for maturation and release. It’s also a time to prepare the uterine lining to accept the fertilized egg and allow it to develop. When your bleeding stops, your estrogen levels will quickly start rising, as well as your FSH (Follicle Stimulating Hormone)—which is done in order to encourage one of the eggs to grow. This part of the process peaks at about day 14 of your cycle and is called ovulation. It’s at this time in your cycle that progesterone levels will begin to quickly raise, and the egg has approximately 48 hours to become fertilized.

It is AFTER the phase of ovulation has passed that blood levels of estrogen and progesterone are rapidly rising and this is what seems to contribute to better postural blood pressure control—lessened tachycardia and overall energy.

Say the egg is not fertilized during this period—and instead the two main hormones (estrogen and progesterone) rapidly and suddenly drop straight down to almost nothing. The uterus sheds its lining (otherwise known as menses or a “period”) and this is when POTs patients may feel their worst.

 

Be sure to head on over to the Santa Maria Medicine blog for the full post and for tips to what helps relieve your symptoms.

In May 2009 a study was done which looked at the link between women’s monthly cycle and POTs called:

Menstrual Cycle Affects Renal-Adrenal and Hemodynamic Responses During Prolonged Standing in the Postural Orthostatic Tachycardia Syndrome
By: by Fu, VanGundy, Shibata, Auchus, Williams and Levine

The study looks at the difference in the Mid-Luteal Phase vs the Follicular phase of our menstural cycle and how it may affect us.

You can get a lovely break down of what the study means over on the Pots and OI recovery Blog, be sure to check it out 🙂

For me, Lifestyle choices are everything to how I feel during the month. If I eat any sort of Gluten, thats it I am bloated and out of sorts for at least two days so now I have gone completely Gluten free and have noticed a vast improvement, including with my period symptoms.

A hot water bottle is always a dear friend during this time, though as with all Potsies, be careful not to get too hot or it will make you feel worse, but putting heat on your tummy or sore back during this time is always a comfort.

That… and Chocolate! 😉

 

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Social Welfare Cuts Ireland – 2014

Since going into the wheelchair, I have been in the process of applying for and filling out endless social welfare forms and other such applications now that my Husband, nor I, can no longer work given my current disability.

I never realised how much there was that needed to be applied for when something like this happens.

However,  what came as the biggest surprise is how the Irish social welfare system has completely stopped some payments to new applicants without any prior warning, explanation or alternatives given to replace these payments to those who need it the most, for example, the Mobility Allowance, The Motorised Transport Grant, Diet allowance and Mortgage Interest Relief have all completely stopped outright to new applicants, with many changes in other payments.

However, Those who are currently receiving these payments will continue to do so until the scheme is updated.

Those who continue to get these payments are getting a substantially higher payment and far more benefits than what is now available to new applicants. This is very unequal and unfair. I will highlight the rates of pay below that I have come across directly myself and I will outline a brief explanation of the changes in each of the aforementioned payments as of 2014 with some links for more information, as follows:

I am aware that I have highlighted only a few of the changes overall. If there are any payments that I have not highlighted or that I have overlooked please let me know and I can add it to the post, Thank you.

As well as the obvious recommended payments for people with disabilities like Disability and Carers Allowance. Which have been so far left alone this year, the following are the payments that have either stopped outright, stopped to new applicants or have changes:

THE MOBILITY ALLOWANCE & THE MOTORISED TRANSPORT GRANT

This monthly payment has now been completely stopped to new applicants with no updated news on a replacement scheme, which was supposed to be put in place last June 2013. People currently getting the payment will continue to do so but it will eventually be faded out in lieu of a replacement scheme.

What also has stopped to new applicants as of the same date as this, is the Motorised Transport Grant for those people who need adaptations to their car in order to keep their job. This was done so under the radar that a lot of people are completely unaware of the stoppage.

What worries me is, that The social welfare/Government will come along and say that the Free Travel Pass, that those on some social welfare payments are entitled to, will cover this Mobility Allowance, when it simply doesn’t. Bus Eireann Busses (that will bring you from rural areas to accessible areas of the city) are NOT Wheelchair accessible at all. So getting anywhere from a rural or remote area means paying for a Taxi or relying on others to transport you, which completely defeats the purpose and that is why the Mobility allowance and the Motorised Transport Grant is valid and needed.

Now in February 2014, there is still no sign or mention of a replacement scheme for those of us who need it most – info as follows:

The Mobility Allowance: As printed on Citizens information.ie on the 14th February 2014:

The Mobility Allowance is a means tested monthly payment payable by the Health Service Executive (HSE). It is paid to people who are aged 16 and over and under age 66, and who have a disability and are unable to walk or use public transport and who would benefit from a change in surroundings; (for example, by financing the occasional taxi journey). If an allowance is awarded, it will be continued beyond the age of 66 but you may not apply for the allowance if you are aged 66 or over.

There is no specific legislation in Ireland providing for Mobility Allowance. Instead, this Allowance was introduced in 1979 by the Department of Health and is payable under Section 61 of the Health Act, 1970.

On 26 February 2013, the Department of Health announced that the Mobility Allowanced scheme was closed to new applicants. An alternative scheme is being devised to replace it.

On 11th June 2013, the Department of Health announced that Mobility Allowance would continue to be paid to those already receiving it until the scheme is replaced.

Rates:

The allowance is paid monthly. The lower rate is payable to those who are availing of the Disabled Drivers and Disabled Passengers (Tax Concessions) Scheme. The rates for 2012 are:

High rate Low rate
€208.50 per month €104.25 per month

That is a substantial amount of extra money per month that some people are continuing to get, yet new applicants can no longer apply.

DIETARY SUPPLEMENT:

Another weekly payment that has been completely cut without any explanation as of the 1st of Feb 2014 is the Dietary Supplement.

Our local Social Welfare Employee told us that as the 1st of February fell on a Saturday this year 2014 (the day this payment stopped) She and the other workers only got the email memo sent about it when they arrived into work on Monday the 3rd, She said they got no prior warning or explanation.

Changes in 2014 – As printed on Citizens information.ie on the 14th February 2014:

The diet supplement was discontinued for new applicants from 1 February 2014.

However, people who were getting Diet Supplement before 1 February 2014 can continue to keep the payment (for as long as they continue to be entitled to the payment).

You are entitled to retain the diet supplement for a prescribed diet, if you:

  • Have a specified medical condition
  • Meet the conditions for Supplementary Welfare Allowance (SWA) and
  • Satisfy a means test

To get a diet supplement, a hospital consultant or a hospital registrar must certify:

  • That you or your adult dependant or child dependant has been prescribed a diet because of a specified medical condition
  • The type of diet prescribed
  • How long you will need the prescribed diet.

A gluten free diet for an adult or a child aged 18 to 22 may be prescribed by your family doctor (GP).

In the case of diet supplements, for example, for people with cystic fibrosis, the long-term illness scheme book may be accepted as verification that such a diet has been prescribed. The length of time for which the diet is being prescribed and the type of diet must be stated.

Qualifying diets

The weekly cost of each prescribed diet is set by the Department of Social Protection. The following diets qualify for the diet supplement: (Some people are continuing to get these payments, but new applicants can not apply)

Qualifying prescribed diets Cost of diet, €
Low-lactose, milk-free diet 65.43
Gluten-free diet 68.43
High-protein, high-calorie diet 71.43
Altered consistencies (liquidised) diet 74.93

HOUSING ADAPTATION GRANTS:

They are very difficult to get as funds are being held tight at the moment. I have also been told from a Social Welfare Employee over the phone that they have not been allocated the funds for 2014 as of yet and that I will more than likely not hear anything about this until next year 2015. I had all documents in since the end of 2013!

Changes in 2014 – As printed on Citizens information.ie on the 14th February 2014:

Changes to 3 housing grant schemes were announced in January 2014 and came into effect immediately. The main changes to the Housing Adaptation Grant for People with a Disability are:

  • The maximum income threshold has been reduced to €60,000 (previously €65,000)
  • The percentages of approved costs covered by the grant have been adjusted on a sliding scale (but the maximum grant stays at €30,000, or 95% of approved costs)
  • Extension works will only qualify if no suitable cheaper option is feasible
  • An occupational therapist must confirm that the works are fit for purpose and that they meet the applicant’s needs in the most economic way
  • Income of all household members will now be included in the means test (though Carer’s Allowance should be disregarded)
  • Applicants must prove that they have complied with the Local Property Tax

The Department of the Environment, Community and Local Government say it is preparing revised guidelines for the 3 schemes.

MORTGAGE INTEREST SUPPLEMENT

This weekly payment has now been completely stopped from social welfare. If you are now having difficulty with your Mortgage payments you must speak to your bank in organising help with your payments, yet, once again, People who are currently on it or who applied before Jan 1st 2014 will continue to get payments for as long as they are entitled.

Changes in 2014 – As printed on Citizens information.ie on the 14th February 2014:

Mortgage Interest Supplement (MIS) provides short-term support to help you pay your mortgage interest repayments.

From 1 January 2014, the Mortgage Interest Supplement scheme is closed to new entrants and no new applications will be accepted from this date. This measure does not affect current claimants immediately (people who were getting Mortgage Interest Supplement before 1 January 2014). The scheme will be wound down for these claimants over a 4-year period.

If you are experiencing short-term mortgage difficulties your lender must support and engage with you under the Mortgage Arrears Resolution Process (MARP). The website, keepingyourhome.ie, provides comprehensive information on the services and entitlements available if you are having difficulties making your mortgage repayments.

RESPITE CARE GRANT

The Respite Care Grant used to be €1700 and is now €1,375 and is paid once each year, usually on the first Thursday in June, for each person you are caring for. It is not taxable.

Changes in 2014 – As printed on Citizens information.ie on the 14th February 2014:

Information

The Respite Care Grant is an annual payment made to carers by the Department of Social Protection. Carers can use the grant in whatever way they wish. You can use the grant to pay for respite care if you wish, but you do not have to do so. More information about respite care facilities is available.

In June of each year (usually on the first Thursday of the month), the Department of Social Protection pays the grant automatically to carers getting Carer’s Allowance, Carer’s Benefit, Domiciliary Care Allowance or Prescribed Relative’s Allowance from the Department. Only one Respite Care Grant can be paid for each person getting care.

__________________________________________________________________________

The long and short of this is, The Irish Social Welfare System needs to get the finger out and sort out their payments so that it is fair and considerate to all people on these benefits.

Some people are out of work, not by choice but because they have been forced to by illness or some other uncontrollable outside source. In these situations support from the state is expected and yet, never organised enough or forthcoming at all.

The only thing about this whole thing that bothers me the most is that the people who already are getting some of the payments will continue to do so until a ‘new scheme’ is written up, and there is no sign of that happening nearly a year after they said it would. New applicants need not apply, we don’t even get the chance to anymore.

This has caused a serious situation of inequality for those who find themselves newly disabled. These people are the most vulnerable in their new state, but receive no proper support.

These haven’t been cuts, they are a cost saving exercise at the expense of the newly disabled which is simply not fair.

I would love feedback on how any of this has affected you directly or affected someone you know. As always you can submit a comment here or write to me at irishpotsies@gmail.com, either anonymously or otherwise, I always love to hear from you 🙂

May is EDS Awareness Month!

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MAY Is EDS Awareness Month, and for the occasion I will write an update to my ‘Diagnosis Story’ which can be read HERE.

Lots of things have happened in the last year in relation to my EDS. If you would like to submit your diagnosis story, write to the good folk over at EDS Awareness Ireland or drop us a line here at: irishpotsies@gmail.com and I will feature them on the page, you can write anonymously or leave your name, whatever you are comfy with but writing your story would be a great way to raise awareness for others who know nothing of this illness. Help us out! 🙂

Syncope in the Hydro Pool, Caused a Small Panic!

So there I was, after putting down 2 weeks of being ill and fainting all over the place, I had canceled hydro and physio a number of times due to the flare up, there was just no way I could physically do it.

I was finally feeling better, no faint in about a week and I was sitting on the transfer chair in my swimsuit, waiting to be lowered into the water.

“Hang on”, said the physio.

The assistant stopped turning the crank and the chair stopped dead, my feet hanging off the end, just above the water. I was suspended like a prisoner as she took a look.

“You’re looking pale, how are you feeling now, are you sure you are able for this today?”

I reassured her that I felt well, which I did, at the time… but that I could not guarantee that I wouldn’t faint, as that is the nature of the illness!
She looked at me skeptically and gave in.

“Alright then”, she gestured for me to be lowered in and down I went.

I felt the warm liquid envelop my skin like I was being evenly coated in wet cellophane. Regular pool temperatures reside at about 28ºC while this and all other Hydrotherapy pools stay at about 35ºC  which feels… lovely, actually 😀

Warmth and Pots don’t usually go well together, this had never bothered me before now.

The physio kept a skeptical eye on me as she gave me some exercises to do and went over to help another patient in the pool.

Leg raises, looking around, warm pool, sunlight pouring in the windows… No warning…

Darkness… a sound of water in my ears… muffled, panicked voices, bubbles, water in my eyes, ears, mouth, I cant breath… Darkness…

I cant remember anything only those snippets until I woke up suddenly, some time later  with pretty severe pains in my chest and ribs. I woke but my eyes were still closed, I could hear a siren going off. Urgent voices, someone counting… that pain in my chest again…

1, 2, 3, 4, 5, …

1, 2, 3, 4, 5, …

Chest compressions, well that explains that!! I must have made some sort of movement or noise, though I couldn’t talk at that point, the physio scooped up my head and asked me to open my eyes.

BLINDED!!! oh gawd, just white light for a few moments then I could see… everyone!!!!
where there was only the Physio and her assistant before, now there were a tonne of people standing and kneeling around me!!

A few nurses, a couple of surgeons (no seriously, he was the only head doctor on call that day so he and his assistant came down from surgery in full get up!!)
A couple of porters, a load of physios that I had never seen before, and some lady in a suit asking a load of questions and rushing around filling out paperwork!!

I had to be kept on the ground for a while to keep an eye on me and to try and wait for my BP to rise again, apparently I frightened the crap out of them!! When I was out, the physio couldn’t find a pulse so decided to start chest compressions on me after they got me out of the water… I was nursing those ribs for a good 5 days after it but how can I complain? She did her job and did it well with what happened!

Anyhow, making a long story slightly longer… That is the end of Hydrotherapy for me for the moment as they don’t want me back until the syncope is under control. I am peeved to be honest, I found it very good, but I understand why I cant take the risk so Ill be sticking with dry physio for now!!

Not much going on at the moment other than, still waiting on the Motorised chair, no idea when that is coming. I am due a load of different hospital appointments but no sign of them yet, I have to be called for painkilling injections in my sacroiliac joint and hip, again, no idea when they are coming and other than that I am just tipping away trying to keep myself busy.

So, How are you folks doing, any news for me??